Lupus FAQ

Question:

sedum41 wrote: > I had racing heart and skipping heart beats when I took Sudafed PE pills > which also has Phenylephrine as an active ingredient. Quite scary to > experience! Probably should have gone to an ER but instead just waited for > it to run its course.

I once made the mistake of taking both Sudafed and a big swig of cough medicine that also had pseudoephedrine in it.  So I ended up getting more than twice as much pseudoephedrine dose as you’re supposed to. Not only did I experience the tachycardia and palpitations you’re describing, but I also got chest pains (a sign that my heart wasn’t liking this) and the feeling of "ants crawling on my skin."  Scariest night I ever had. — Steven D. Litvintchouk Email:  sdlit…@earthlinkNOSPAM.net Remove the NOSPAM before replying to me.

Response:

- Hide quoted text — Show quoted text -augustwestern wrote: > <ryancin…@aol.com> wrote in message > news:1126629657.604072.30970@g49g2000cwa.googlegroups.com… >>I am hoping that someone may be able to provide an answer to my >>question: >>I have been using 4-Way Nasal Spray (Phenylephrine HCL 1%) daily for >>the last 12 years, as a stop gap solution for congestion (which I’ve >>had my entire life) >>I typically use this spray every fifteen minutes, six squirts each >>nostril, and use about four bottles per week. At this point, the >>congestion is obviously terrible. However, that is not my main concern: >>One year ago back on Sept 8, I started to have strange symptoms, >>actually had to go via ambulance to the hospital twice. The symptoms >>are severe tachycardia, skipped beats, severe onset of shortness of >>breath, numbness, tingling, vertigo. They all seemed to come out of >>know where. >>Since, I have had cardiology and pulmonary testing done, but there are >>no answers. The only two things that turned up were a positive ANA and >>elevated Cortisol levels (not autoimmune, no Lupus found). >>I was placed on Atenolol 50 mg for the Tachycardia, which is useless. >>My question is, can the 1% solution of Phenylephrine as found in most >>nasal sprays have caused these symptoms? The doctor says no, but surely >>abusing this stuff cannot be good. Any insight? >>PS: Is Rhinocort any good? >>Best, >>Bill > That is a huge overdosage of Phenylephrine. You’ll need to > taper off and this won’t be easy. Measure and dilute each new bottle you > open by another 10% with saline water and always do the same amount of > squirts (1 or 2) and keep track of exactly how many times a day you use the > spray. Increase the dilution of each new bottle you open by another 10% > until you need to throw away a measured amount of a new bottle in order to > keep increasing dilution. Decrease the frequency of squirts used each day > and keep track so you can always be slowly decreasing frequency.

There is now at least one product on the market, "Rhinostat," specifically designed to assist the process of tapering off nasal sprays: http://nasalspray.com/ I’ve never used it so I don’t know how well it works. But it indicates how common this problem is. — Steven D. Litvintchouk Email:  sdlit…@earthlinkNOSPAM.net Remove the NOSPAM before replying to me.

Response:

On 13 Sep 2005 09:40:57 -0700, ryancin…@aol.com wrote: >My question is, can the 1% solution of Phenylephrine as found in most >nasal sprays have caused these symptoms?

Yes Phenylephrine has well-known cardiac side-effects.  You do need to get off it. Steven’s posts are exactly correct. The tachycardia is not necessarily of enormous consequence,  but anything to do with your heart is more important than other things. >PS: Is Rhinocort any good?

Yes but it alone is probably not enough to deal with the rebound congestion you are going to experience when you start to cut back on the Phenylephrine. You may need a short-course of gradually-decreasing prescribed oral steroids, under the supervision of an ENT, to tide you over when you start cutting back on the Phenylephrine.   However, oral steroids should not casually be taken long term as they can have even worse side-effects than the Phenylephrine, so really you will have to plot your course carefully with the help of an ENT, as Steven suggests…..

Response:

I had racing heart and skipping heart beats when I took Sudafed PE pills which also has Phenylephrine as an active ingredient. Quite scary to experience! Probably should have gone to an ER but instead just waited for it to run its course. Later found out I took the wrong dose 2 pills instead of 1 pill like the original Sudafed (Pseudoephedrine) dose. I called the makers of Sudafed and said their packaging was misleading (packed in groups of 2 if you can believe it). I think each person reacts differently to the various decongestants. I can’t believe that the doctor wouldn’t think this contributed to your symptoms. Just look at the package directions and see the warnings! I think the suggestions to do the withdrawal under an ENT’s care sound the most likely for success. Good luck!

Response:

I am hoping that someone may be able to provide an answer to my question: I have been using 4-Way Nasal Spray (Phenylephrine HCL 1%) daily for the last 12 years, as a stop gap solution for congestion (which I’ve had my entire life) I typically use this spray every fifteen minutes, six squirts each nostril, and use about four bottles per week. At this point, the congestion is obviously terrible. However, that is not my main concern: One year ago back on Sept 8, I started to have strange symptoms, actually had to go via ambulance to the hospital twice. The symptoms are severe tachycardia, skipped beats, severe onset of shortness of breath, numbness, tingling, vertigo. They all seemed to come out of know where. Since, I have had cardiology and pulmonary testing done, but there are no answers. The only two things that turned up were a positive ANA and elevated Cortisol levels (not autoimmune, no Lupus found). I was placed on Atenolol 50 mg for the Tachycardia, which is useless. My question is, can the 1% solution of Phenylephrine as found in most nasal sprays have caused these symptoms? The doctor says no, but surely abusing this stuff cannot be good. Any insight? PS: Is Rhinocort any good? Best, Bill

Response:

- Hide quoted text — Show quoted text -ryancin…@aol.com wrote: > I am hoping that someone may be able to provide an answer to my > question: > I have been using 4-Way Nasal Spray (Phenylephrine HCL 1%) daily for > the last 12 years, as a stop gap solution for congestion (which I’ve > had my entire life) > I typically use this spray every fifteen minutes, six squirts each > nostril, and use about four bottles per week. At this point, the > congestion is obviously terrible. However, that is not my main concern: > One year ago back on Sept 8, I started to have strange symptoms, > actually had to go via ambulance to the hospital twice. The symptoms > are severe tachycardia, skipped beats, severe onset of shortness of > breath, numbness, tingling, vertigo. They all seemed to come out of > know where. > Since, I have had cardiology and pulmonary testing done, but there are > no answers. The only two things that turned up were a positive ANA and > elevated Cortisol levels (not autoimmune, no Lupus found). > I was placed on Atenolol 50 mg for the Tachycardia, which is useless. > My question is, can the 1% solution of Phenylephrine as found in most > nasal sprays have caused these symptoms?

Absolutely. Phenylephrine is a stimulant and a vasoconstrictor.  With a large enough dose, some of it will get absorbed systemically into your bloodstream right thru your nose (just like snorting cocaine).  And it may end up causing both tachycardia and constricting the blood vessels in your heart–which can be disastrous.  The symptoms you’re describing fit the combination of overstimulation and vasoconstriction exactly. You’ll have to taper off the phenylephrine.  I think you should consult a physician who knows about this problem–the medical name is "rhinitis medicamentosa."  He can prescribe a combination of systemic steroids (Medrol) and steroid nasal sprays (e.g., Nasonex) to help you cope with the withdrawal symptom of congestion till your body adjusts.  Without these prescription meds, you may not be able to kick the habit on your own–though you can try it and see. Once you’re off the phenylephrine, you should consult an ENT who can finally help cure your congestion so you won’t ever have to go back to phenylephrine anymore. — Steven D. Litvintchouk Email:  sdlit…@earthlinkNOSPAM.net Remove the NOSPAM before replying to me.

Response:

<ryancin…@aol.com> wrote in message

news:1126629657.604072.30970@g49g2000cwa.googlegroups.com… – Hide quoted text — Show quoted text -> I am hoping that someone may be able to provide an answer to my > question: > I have been using 4-Way Nasal Spray (Phenylephrine HCL 1%) daily for > the last 12 years, as a stop gap solution for congestion (which I’ve > had my entire life) > I typically use this spray every fifteen minutes, six squirts each > nostril, and use about four bottles per week. At this point, the > congestion is obviously terrible. However, that is not my main concern: > One year ago back on Sept 8, I started to have strange symptoms, > actually had to go via ambulance to the hospital twice. The symptoms > are severe tachycardia, skipped beats, severe onset of shortness of > breath, numbness, tingling, vertigo. They all seemed to come out of > know where. > Since, I have had cardiology and pulmonary testing done, but there are > no answers. The only two things that turned up were a positive ANA and > elevated Cortisol levels (not autoimmune, no Lupus found). > I was placed on Atenolol 50 mg for the Tachycardia, which is useless. > My question is, can the 1% solution of Phenylephrine as found in most > nasal sprays have caused these symptoms? The doctor says no, but surely > abusing this stuff cannot be good. Any insight? > PS: Is Rhinocort any good? > Best, > Bill

The Phenylephrine in 4-way is the obvious culprit and I’m really surprised your Dr didn’t know this.  Phenylephrine can cause the exact same symptoms as overusing any stimulant, whether it is coffee or diet pills. 12 hr nose spray isn’t any better but the rebound happens a little quicker with Phenylephrine. I used 4-way for many years in the past, but never at 4 bottles a week. That is a huge overdosage of Phenylephrine. You’ll need to taper off and this won’t be easy. Measure and dilute each new bottle you open by another 10% with saline water and always do the same amount of squirts (1 or 2) and keep track of exactly how many times a day you use the spray. Increase the dilution of each new bottle you open by another 10% until you need to throw away a measured amount of a new bottle in order to keep increasing dilution. Decrease the frequency of squirts used each day and keep track so you can always be slowly decreasing frequency. After you get down to using .05%  Phenylephrine or a twentyfold dilution and you are using only 1 squirt at a time, then try stopping entirely or alternating days. Then quit the Phenylephrine completely and don’t buy any more. You may need to use Sudafed  for a few weeks while tapering off the Phenylephrine as the rebound will be severe. Also, start using a nasal steroid like Rhinacort or Flonase regularly. If you really stick with it, you can taper yourself off the Phenylephrine in 2-3 months. Suggest you monitor your blood pressure closely while using the Sudafed and see a good ENT to help you develop a better strategy for dealing with your congestion.  Read the group FAQ and especially the section about saline nasal irrigation. Regular saline irrigation would be very helpful in getting your nose readjusted to life without Phenylephrine. good luck,    AW ps-oral Phenylephrine tablets are now available but you really need a Dr’s advice if you are planning to switch from such a high dose of nasal spray to the tablets – especially considering the heart symptoms that you have already had.

Response:

Question:

Hi All – I am posting for a friend of mine because you are all a knowledgable bunch. She is having this strange swelling of the side of her face, around her jaw line and sometimes up into her cheek. I looks like a tennis ball in the side of her face where the jaw line meets the neck, and the cheek area will also look swollen. The swelling lasts for about a day or two and is random in when it occurs. They thought it might be allergies — it happens right after she eats, but there is no consistency in which food makes it happen — she can be fine eating it one time and not the next. The only constant is that it always happens immediately after eating. I was thinking something with the salivary glands. I know some of you have Sjoners (spell?) — does that happen to any of you? Just thought I would ask. Thanks!!! Stephanie

Response:

"Velma Crain"  wrote in message > Stephanie, >      I would definitely have your friend check into Sjogrens Syndrome. One > of the symptoms is swollen salivary glands.  I have Sjogrens and recently > had an infection in my salivary gland that caused my ear to swell shut (I > couldnt hear) the pain was intense.  I had had many other symptoms in the > past but this was the one that finally caused my DR to say yup you have > Sjogrens!!  I was given an antibiotic and lived on Motrin for a few days!! >           Frankie

Ditto on what Frankie has said. Sjogrens comes as a first dx in my mind too as I have had the salivary gland problem (blocked and inflamed which worsens with aggravation; ie: eating) with my dx of sjogrens, which is secondary to lupus along with raynauds. Wishing good luck to her, hugs, Shelagh

Response:

Thanks for the info — I thought Sjogrens as well when I heard it. I don’t have that, so I wanted to opinions of people who have experienced symptoms from it. Thanks for the info! I will pass it on… Steph "Shelagh" <n…@myob.bc.ca> wrote in message

news:XTgGd.86654$8l.22640@pd7tw1no… – Hide quoted text — Show quoted text -> "Velma Crain"  wrote in message >> Stephanie, >>      I would definitely have your friend check into Sjogrens Syndrome. >> One of the symptoms is swollen salivary glands.  I have Sjogrens and >> recently had an infection in my salivary gland that caused my ear to >> swell shut (I couldnt hear) the pain was intense.  I had had many other >> symptoms in the past but this was the one that finally caused my DR to >> say yup you have Sjogrens!!  I was given an antibiotic and lived on >> Motrin for a few days!! >>           Frankie > Ditto on what Frankie has said. > Sjogrens comes as a first dx in my mind too as I have had the salivary > gland problem (blocked and inflamed which worsens with aggravation; ie: > eating) with my dx of sjogrens, which is secondary to lupus along with > raynauds. > Wishing good luck to her, > hugs, Shelagh

Response:

In article <7fOdnVxec5C7uHrcRVn…@comcast.com>, Stephanie Townsend <ler…@hotmail.com> wrote >Hi All – >I am posting for a friend of mine because you are all a knowledgable bunch. >She is having this strange swelling of the side of her face, around her jaw >line and sometimes up into her cheek. I looks like a tennis ball in the side >of her face where the jaw line meets the neck, and the cheek area will also >look swollen. The swelling lasts for about a day or two and is random in >when it occurs. They thought it might be allergies — it happens right after >she eats, but there is no consistency in which food makes it happen — she >can be fine eating it one time and not the next. The only constant is that >it always happens immediately after eating. I was thinking something with >the salivary glands. I know some of you have Sjoners (spell?)

Sjogrens – with two dots above the o if you’re being posh > — does that >happen to any of you? Just thought I would ask.

Yes it does. One  cause is constriction of the tube that delivers the saliva from the gland (you have 4 glands I think, or maybe its 6) into the mouth. When saliva is produced it can’t get out, so the gland swells.  Another is inflammation of the gland. — Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

Stephanie,       I would definitely have your friend check into Sjogrens Syndrome. One of the symptoms is swollen salivary glands.  I have Sjogrens and recently had an infection in my salivary gland that caused my ear to swell shut (I couldnt hear) the pain was intense.  I had had many other symptoms in the past but this was the one that finally caused my DR to say yup you have Sjogrens!!  I was given an antibiotic and lived on Motrin for a few days!!            Frankie – Hide quoted text — Show quoted text -Stephanie Townsend wrote: >Hi All – >I am posting for a friend of mine because you are all a knowledgable bunch. >She is having this strange swelling of the side of her face, around her jaw >line and sometimes up into her cheek. I looks like a tennis ball in the side >of her face where the jaw line meets the neck, and the cheek area will also >look swollen. The swelling lasts for about a day or two and is random in >when it occurs. They thought it might be allergies — it happens right after >she eats, but there is no consistency in which food makes it happen — she >can be fine eating it one time and not the next. The only constant is that >it always happens immediately after eating. I was thinking something with >the salivary glands. I know some of you have Sjoners (spell?) — does that >happen to any of you? Just thought I would ask. >Thanks!!! >Stephanie

Response:

Could be — the first time it happened on both sides of the face and she went to the emergency room – she stumped the docs there. Strange… "J" <exam…@example.net> wrote in message

news:41E72728.6D50CA9@execulink.com… – Hide quoted text — Show quoted text -> Stephanie Townsend wrote: >> I am posting for a friend of mine because you are all a knowledgable >> bunch. >> She is having this strange swelling of the side of her face, around her >> jaw >> line and sometimes up into her cheek. I looks like a tennis ball in the >> side >> of her face where the jaw line meets the neck, and the cheek area will >> also >> look swollen. The swelling lasts for about a day or two and is random in >> when it occurs. They thought it might be allergies — it happens right >> after >> she eats, but there is no consistency in which food makes it happen —   >> she >> can be fine eating it one time and not the next. The only constant is >> that >> it always happens immediately after eating. I was thinking something with >> the salivary glands. > could be…also could be infected tooth > J

Response:

- Hide quoted text — Show quoted text -On Thu, 13 Jan 2005 20:53:13 -0500, Stephanie Townsend wrote: > Could be — the first time it happened on both sides of the face and she > went to the emergency room – she stumped the docs there. Strange… > "J" <exam…@example.net> wrote in message > news:41E72728.6D50CA9@execulink.com… >> Stephanie Townsend wrote: >>> I am posting for a friend of mine because you are all a knowledgable >>> bunch. >>> She is having this strange swelling of the side of her face, around her >>> jaw >>> line and sometimes up into her cheek. I looks like a tennis ball in the >>> side >>> of her face where the jaw line meets the neck, and the cheek area will >>> also >>> look swollen. The swelling lasts for about a day or two and is random in >>> when it occurs. They thought it might be allergies — it happens right >>> after >>> she eats, but there is no consistency in which food makes it happen —   >>> she >>> can be fine eating it one time and not the next. The only constant is >>> that >>> it always happens immediately after eating. I was thinking something with >>> the salivary glands. >> could be…also could be infected tooth >> J

Sounds to me like a stone in a salivary gland. Just heard something like that on the radio yesterday (I think). I’m certainly no expert so take my guess with a grain of salt, please. Timothy

Response:

Stephanie Townsend wrote: > I am posting for a friend of mine because you are all a knowledgable bunch. > She is having this strange swelling of the side of her face, around her jaw > line and sometimes up into her cheek. I looks like a tennis ball in the side > of her face where the jaw line meets the neck, and the cheek area will also > look swollen. The swelling lasts for about a day or two and is random in > when it occurs. They thought it might be allergies — it happens right after > she eats, but there is no consistency in which food makes it happen — she > can be fine eating it one time and not the next. The only constant is that > it always happens immediately after eating. I was thinking something with > the salivary glands.

could be…also could be infected tooth J

Response:

Question:

johnathon wrote: > I have a combination of Mixed Connective Tissue Disorder (MCTD) and lupus. > Today I received a blood test result in which the Erythrocyte Sedimation > Rate has a figure of 22. I have heard that it’s considered normal for a > figure of 24-25 for a female of my age, but the clinic told me that 15 was > considered the highest safe level. I’m confused and frightened as no one > seems able to agree. Seems that I need steroids – is that really necessary?

Hello and welcome D, talk to us anytime J

Response:

- Hide quoted text — Show quoted text -KCat wrote: > "johnathon" <johnat…@johnathonrose.com> wrote in message > news:creluj$8at$1@newsg3.svr.pol.co.uk… > > I have a combination of Mixed Connective Tissue Disorder (MCTD) and lupus. > > Today I received a blood test result in which the Erythrocyte Sedimation > > Rate has a figure of 22. I have heard that it’s considered normal for a > > figure of 24-25 for a female of my age, but the clinic told me that 15 was > > considered the highest safe level. I’m confused and frightened as no one > > seems able to agree. Seems that I need steroids – is that really > necessary? > > Thanks in advance, > > D. > Hi D. > An ESR of 22 is rarely noted by most docs.  If it repeats, then they may > want to look into it further but i’ve had ESRs up to 40 and doc just shrugs > and says "it’s how much inflammation/pain you have."

So anti-inflammatory for pain should do it? J

Response:

Hi D, You really want to try and avoid steriods – if you can. The side effects of long term use are ugly.  I’ve been on steroids for a long time.  Without steroids my ESR runs from 110-120.  With them I’m down to 50-55.   With an ESR of 22, you should be ok. Linda

Response:

If there is pain at all – then an anti-inflammatory can help – but they aren’t generally disease-modifying such as steroids and chemo.  So they are not likely to alter the ESR. Aspirin, naproxen and such do reduce part of the inflammatory process – but not the beginning of it.  But the ESR is just a symptom – and lowering it by drugs of any kind may not mean anything to the disease process.  Some people have normally "high" ESRs, some low.  I’ve seen people (my daughter, myself) in extreme pain with ESRs below 20.  good ol’ immune system, eh? — KCat For Pen Talk, Images, Trading and Reviews: The Fountain Pen Network http://pagesperso.laposte.net/fpnet For Lupus Support and Info http://www.ghg.net/schwerpt/ASLFAQ/ "J" <exam…@example.net> wrote in message

news:41DBC1F9.A7012515@execulink.com… – Hide quoted text — Show quoted text -> KCat wrote: > > "johnathon" <johnat…@johnathonrose.com> wrote in message > > news:creluj$8at$1@newsg3.svr.pol.co.uk… > > > I have a combination of Mixed Connective Tissue Disorder (MCTD) and lupus. > > > Today I received a blood test result in which the Erythrocyte Sedimation > > > Rate has a figure of 22. I have heard that it’s considered normal for a > > > figure of 24-25 for a female of my age, but the clinic told me that 15 was > > > considered the highest safe level. I’m confused and frightened as no one > > > seems able to agree. Seems that I need steroids – is that really > > necessary? > > > Thanks in advance, > > > D. > > Hi D. > > An ESR of 22 is rarely noted by most docs.  If it repeats, then they may > > want to look into it further but i’ve had ESRs up to 40 and doc just shrugs > > and says "it’s how much inflammation/pain you have." > So anti-inflammatory for pain should do it? > J

Response:

I have a combination of Mixed Connective Tissue Disorder (MCTD) and lupus. Today I received a blood test result in which the Erythrocyte Sedimation Rate has a figure of 22. I have heard that it’s considered normal for a figure of 24-25 for a female of my age, but the clinic told me that 15 was considered the highest safe level. I’m confused and frightened as no one seems able to agree. Seems that I need steroids – is that really necessary? Thanks in advance, D.

Response:

Hi D, The normal range for the ESR is listed as 0-20 mm/hr on the listing here. A sed rate of 22 is only slightly higher than the upper limit of normal, and would not be cause for concern really. Is there anything else in your blood results that would prompt the doctor to suggest steriods? Do you have a sudden worsening of symptoms? My ESR is almost always above the normal range, but it isn’t a problem unless there is something else out of whack as well. BJ-Sk.Canada "johnathon" <johnat…@johnathonrose.com> wrote in message

news:creluj$8at$1@newsg3.svr.pol.co.uk… – Hide quoted text — Show quoted text -> I have a combination of Mixed Connective Tissue Disorder (MCTD) and lupus. > Today I received a blood test result in which the Erythrocyte Sedimation > Rate has a figure of 22. I have heard that it’s considered normal for a > figure of 24-25 for a female of my age, but the clinic told me that 15 was > considered the highest safe level. I’m confused and frightened as no one > seems able to agree. Seems that I need steroids – is that really necessary? > Thanks in advance, > D.

Response:

"johnathon" <johnat…@johnathonrose.com> wrote in message

news:creluj$8at$1@newsg3.svr.pol.co.uk… > I have a combination of Mixed Connective Tissue Disorder (MCTD) and lupus. > Today I received a blood test result in which the Erythrocyte Sedimation > Rate has a figure of 22. I have heard that it’s considered normal for a > figure of 24-25 for a female of my age, but the clinic told me that 15 was > considered the highest safe level. I’m confused and frightened as no one > seems able to agree. Seems that I need steroids – is that really necessary? > Thanks in advance, > D.

Hi D. An ESR of 22 is rarely noted by most docs.  If it repeats, then they may want to look into it further but i’ve had ESRs up to 40 and doc just shrugs and says "it’s how much inflammation/pain you have."  :P  ESRs in the 50s and above are usually when doctors start reacting and looking for the source of the problem. Many things can raise your ESR that may have nothing to do with your diagnosis at all – such as stress, a cold, allergies, etc.  So unless you have other symptoms that are creating lots of problems for you that you require steroids for *those* then I wouldn’t worry about this very minimal elevation. It’s important to understand that reference ranges are typically set to pick up on small anomalies that may be inconsequential.  An example, blood glucose – when my husbands b.g. got above 120, the docs wanted to test him for diabetes.  But every diabetic I’ve ever talked to worries more about levels much higher than that – 200s and up.  Reference ranges must also accommodate different genders (women usually have slighltly lower ESRs than men) and ages (younger = lower – typically) and so on.  Another example, the ANA – probably the most ubiquitous lupus blood test out there – 1:80 is considered positive. But most doctors won’t even notice this or diagnose until ANAs show up at 1:640 or more.  1:80, 1:160 and 1:320 are often considered "false positive" or ambiguous.  It is important to record these of course, and to check them regularly.  It may be your "normal" to run at an ESR of 22.  That "normal" may be based on your diagnosis or your genetics. So..unless your symptoms have changed significantly, there should be no reason to change your medication regimen based solely on a minimally elevated ESR. I am not a doctor – but I’ve been researching Lupus and related diseases for 8 years and was a lab technician for an immunology research group at Baylor. Unless something has changed very recently in how ESRs are read (and that test has been around for decades) than I feel 99% confident in my assertions. — KCat For Pen Talk, Images, Trading and Reviews: The Fountain Pen Network http://pagesperso.laposte.net/fpnet For Lupus Support and Info http://www.ghg.net/schwerpt/ASLFAQ/ "johnathon" <johnat…@johnathonrose.com> wrote in message

news:creluj$8at$1@newsg3.svr.pol.co.uk… – Hide quoted text — Show quoted text -> I have a combination of Mixed Connective Tissue Disorder (MCTD) and lupus. > Today I received a blood test result in which the Erythrocyte Sedimation > Rate has a figure of 22. I have heard that it’s considered normal for a > figure of 24-25 for a female of my age, but the clinic told me that 15 was > considered the highest safe level. I’m confused and frightened as no one > seems able to agree. Seems that I need steroids – is that really necessary? > Thanks in advance, > D.

Response:

Question:

Hi Stephanie:))) I know what you mean. I just posted here to Janers. When I pushed send to group it went from hotmail to my Rogers send box , which showed one email. So hmmm , not to be outdone I pressed send again and it said sending 8 messages. Now I see Janers made it to group but where did the other seven go and what were they? Now not only me has bad memory Bruce On. " here and there me thinks:)))

Response:

In article <QpKdnUNfGM7FA13cRVn…@rogers.com>, Bruce <rothnie2…@hotmail.com> wrote >Hi Stephanie:))) >I know what you mean. I just posted here to Janers. When I pushed send to >group it went from hotmail to my Rogers send box , which showed one email. >So hmmm , not to be outdone I pressed send again and it said sending 8 >messages.

When it says "Hit the send key" it does not mean with a 14lb hammer — Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

Hmmm , thanks Andy:))) Bruce On. " tis so cold here I fear it was frozen "

Response:

I am on webtv and posted here a time or two and it got send back to my mail box saying undeliverable lol ((((((((((hugs)))))))))) Melody

Response:

Play it again , Melody Bruce On. "I know andy , weak but the best me can do , have frozen:))) "

Response:

I had a appointment with another neuro yesterday, via satellite.  She told me I present symptoms of both ms and cns lupus.  She ordered the test I had been dreading.  She ordered a lumbar puncture. I had a lumbar puncture done 11 yrs ago due to a headache so bad I was incoherent.  It was before anyone knew I had lupus, anyways they did not numb me or anything and they missed the first time so they had to do it again and the second time they did not numb me either.  It hurt so bad I thought I was going to pass out, I was screaming as loud as I could hoping they would pull the needle or what ever it was out of my back, and I swore I would never have it done again.  It traumatized me that much. I told the neuro of my experience, and she said I have to have it done so they can get me the treatment I need. The neuro  is also questioning why my rhummey is not treating my lupus more aggressively.  I was on that plaquenil but because I suffered horrid headaches he took me off it it. Now my rhummey does not want me on any type of chemo because I have no spleen, unless it is life threatening. The other neuro I was seeing I call him the mean one has had me on 3,000 mg of keppra a day, and seeing how no one knows why I even take it, this neuro wants me off of it.  Which is totally fine with me, those pills are huge and taking six of em a day is not fun. My reg doc was in the room with me, so the neuro had my doc do some tests, like pretending I am walking on a straight line, she had me stand up and hold my arms up, I flunked the memory test.  She tested the reflexes on my legs and arms and I had no reflexes on my right side at all then my doc flashed this light into my eyes I am not sure what test she was doing but she told the neuro she would have to dialate my eyes. Neuro told me that ms and cns lupus are very serious and that I will need to get treated right away.  That scared me.  Sometimes I feel like a ticking time bomb. I was so upset when I left I got sick.  After the neuro was done seeing me she told me to leave the room and that she needed to talk with my reg doc in private.  The nurse walked me out of the room so I asked her do I wait in the lobby or go home or what she said she didn’t know so I just went home.  I had alot of questions for my doctor and no one even told me when to get a follow up. And the lumbar puncture I am scared I am going to go to the hospital see the needle and say I am outta here and freak out.  My anxiety level is so high right now, I am scared plumb to death. And if neuro is right and I have the cns lupus and I have to be on chemo, will I be able to go outside, shopping, will I loose all my hair. Will I have to stay in doors all the time so I don’t risk catching a virus or getting sick?  My girls school plays, will I be able to go to them?  These are some of the questions I have and wanted to ask my doctor.  My reg doc is really cool, she is not a rhummey or a neuro just a reg md but to me she plays all three roles my rhummey does not consult with neuro and when he sends reports to my reg doc its a miracle.  I also have this cognitive thing going on witch neuro suspects is from a cns lupus involvement.  If anyone can please help or offer support please, let me know.  Neuro also said I have to have neuro tests preformed and I need to see a therapist.  Thanks in advance (((((((((hugs)))))) Melody

Response:

Oh Melody! I haven’t posted in awhile, but I was so upset by your post I had to write to tell you that you are in my prayers. I can only imagine how this is all very frightening and overwhelming. I have not had experience with anything you are talking about except that I have had MANY spinal taps due to another condition I have. I know how terrifying they can be. My first one was pretty horrendous as well — an internist was doing it and nicked the nerves and it was quite painful. However — to give you some hope — since then I have had a number of needles in the back/spinals and NONE were like the first. From then on I insisted on an anesthesiologist (sp?) or my pain doc (who is an anesthesiologist as well) to do my spinal taps. They numb with lidocaine, which feels like a small bee sting in the back (not nice but bearable) and then the needle going in feels like a dull to moderate ache. That is all you should feel if a good anesthesiologist is doing it. I know each of us senses pain differently — but I swear the lead up is worse than the actual event. You may want to ask if you can have someone you trust with you to hold your hand and distract you through the procedure. Many times only a nurse is allowed to be there — but I would express your fears to her and ask her to be the support — someones hand to squeeze and someone to talk you through it. And lastly, I have found that deep breathing helps — I take a deep breath right before the first needle goes in — and I breath out hard through my mouth with pursed lips during the initial sting of pain (kinda like labor breathing!). Then I do slow controlled breaths (in through nose, out through pursed lips) during the rest when there is the aching. This helps relax your muscles and takes down on the pain. And lastly, one time I had way too many needles stuck in my back and I broke down and cried to my doc and he ordered Adivan to relax me before the procedure. This may be an option for you. I am so sorry that you must endure all of this. Please keep us updated on how you are doing. Let me know if there is anything else I can tell you about surviving spinal taps. Let us know when it is scheduled so we can all be sending prayers your way on that day. Stephanie "Lassy Lass" <MelodyMans…@webtv.net> wrote in message

news:23442-41BF5224-15@storefull-3218.bay.webtv.net… – Hide quoted text — Show quoted text ->I had a appointment with another neuro yesterday, via satellite.  She > told me I present symptoms of both ms and cns lupus.  She ordered the > test I had been dreading.  She ordered a lumbar puncture. > I had a lumbar puncture done 11 yrs ago due to a headache so bad I was > incoherent.  It was before anyone knew I had lupus, anyways they did not > numb me or anything and they missed the first time so they had to do it > again and the second time they did not numb me either.  It hurt so bad I > thought I was going to pass out, I was screaming as loud as I could > hoping they would pull the needle or what ever it was out of my back, > and I swore I would never have it done again.  It traumatized me that > much. > I told the neuro of my experience, and she said I have to have it done > so they can get me the treatment I need. > The neuro  is also questioning why my rhummey is not treating my lupus > more aggressively.  I was on that plaquenil but because I suffered > horrid headaches he took me off it it. > Now my rhummey does not want me on any type of chemo because I have no > spleen, unless it is life threatening. > The other neuro I was seeing I call him the mean one has had me on 3,000 > mg of keppra a day, and seeing how no one knows why I even take it, this > neuro wants me off of it.  Which is totally fine with me, those pills > are huge and taking six of em a day is not fun. > My reg doc was in the room with me, so the neuro had my doc do some > tests, like pretending I am walking on a straight line, she had me stand > up and hold my arms up, I flunked the memory test.  She tested the > reflexes on my legs and arms and I had no reflexes on my right side at > all then my doc flashed this light into my eyes I am not sure what test > she was doing but she told the neuro she would have to dialate my eyes. > Neuro told me that ms and cns lupus are very serious and that I will > need to get treated right away.  That scared me.  Sometimes I feel like > a ticking time bomb. I was so upset when I left I got sick.  After the > neuro was done seeing me she told me to leave the room and that she > needed to talk with my reg doc in private.  The nurse walked me out of > the room so I asked her do I wait in the lobby or go home or what she > said she didn’t know so I just went home.  I had alot of questions for > my doctor and no one even told me when to get a follow up. > And the lumbar puncture I am scared I am going to go to the hospital see > the needle and say I am outta here and freak out.  My anxiety level is > so high right now, I am scared plumb to death. > And if neuro is right and I have the cns lupus and I have to be on > chemo, will I be able to go outside, shopping, will I loose all my hair. > Will I have to stay in doors all the time so I don’t risk catching a > virus or getting sick?  My girls school plays, will I be able to go to > them?  These are some of the questions I have and wanted to ask my > doctor.  My reg doc is really cool, she is not a rhummey or a neuro just > a reg md but to me she plays all three roles my rhummey does not consult > with neuro and when he sends reports to my reg doc its a miracle.  I > also have this cognitive thing going on witch neuro suspects is from a > cns lupus involvement.  If anyone can please help or offer support > please, let me know.  Neuro also said I have to have neuro tests > preformed and I need to see a therapist.  Thanks in advance > (((((((((hugs)))))) Melody

Response:

Hmmm — sorry about the three posts. Have NO idea how that happened. "Stephanie Townsend" <ler…@hotmail.com> wrote in message

news:EqydnR0B25G0HSLcRVn-jg@comcast.com… – Hide quoted text — Show quoted text -> Oh Melody! > I haven’t posted in awhile, but I was so upset by your post I had to write > to tell you that you are in my prayers. I can only imagine how this is all > very frightening and overwhelming. I have not had experience with anything > you are talking about except that I have had MANY spinal taps due to > another > condition I have. I know how terrifying they can be. My first one was > pretty > horrendous as well — an internist was doing it and nicked the nerves and > it > was quite painful. However — to give you some hope — since then I have > had > a number of needles in the back/spinals and NONE were like the first. From > then on I insisted on an anesthesiologist (sp?) or my pain doc (who is an > anesthesiologist as well) to do my spinal taps. They numb with lidocaine, > which feels like a small bee sting in the back (not nice but bearable) and > then the needle going in feels like a dull to moderate ache. That is all > you > should feel if a good anesthesiologist is doing it. I know each of us > senses > pain differently — but I swear the lead up is worse than the actual > event. > You may want to ask if you can have someone you trust with you to hold > your > hand and distract you through the procedure. Many times only a nurse is > allowed to be there — but I would express your fears to her and ask her > to > be the support — someones hand to squeeze and someone to talk you through > it. And lastly, I have found that deep breathing helps — I take a deep > breath right before the first needle goes in — and I breath out hard > through my mouth with pursed lips during the initial sting of pain (kinda > like labor breathing!). Then I do slow controlled breaths (in through > nose, > out through pursed lips) during the rest when there is the aching. This > helps relax your muscles and takes down on the pain. And lastly, one time > I > had way too many needles stuck in my back and I broke down and cried to my > doc and he ordered Adivan to relax me before the procedure. This may be an > option for you. > I am so sorry that you must endure all of this. Please keep us updated on > how you are doing. Let me know if there is anything else I can tell you > about surviving spinal taps. Let us know when it is scheduled so we can > all > be sending prayers your way on that day. > Stephanie > "Lassy Lass" <MelodyMans…@webtv.net> wrote in message > news:23442-41BF5224-15@storefull-3218.bay.webtv.net… >>I had a appointment with another neuro yesterday, via satellite.  She >> told me I present symptoms of both ms and cns lupus.  She ordered the >> test I had been dreading.  She ordered a lumbar puncture. >> I had a lumbar puncture done 11 yrs ago due to a headache so bad I was >> incoherent.  It was before anyone knew I had lupus, anyways they did not >> numb me or anything and they missed the first time so they had to do it >> again and the second time they did not numb me either.  It hurt so bad I >> thought I was going to pass out, I was screaming as loud as I could >> hoping they would pull the needle or what ever it was out of my back, >> and I swore I would never have it done again.  It traumatized me that >> much. >> I told the neuro of my experience, and she said I have to have it done >> so they can get me the treatment I need. >> The neuro  is also questioning why my rhummey is not treating my lupus >> more aggressively.  I was on that plaquenil but because I suffered >> horrid headaches he took me off it it. >> Now my rhummey does not want me on any type of chemo because I have no >> spleen, unless it is life threatening. >> The other neuro I was seeing I call him the mean one has had me on 3,000 >> mg of keppra a day, and seeing how no one knows why I even take it, this >> neuro wants me off of it.  Which is totally fine with me, those pills >> are huge and taking six of em a day is not fun. >> My reg doc was in the room with me, so the neuro had my doc do some >> tests, like pretending I am walking on a straight line, she had me stand >> up and hold my arms up, I flunked the memory test.  She tested the >> reflexes on my legs and arms and I had no reflexes on my right side at >> all then my doc flashed this light into my eyes I am not sure what test >> she was doing but she told the neuro she would have to dialate my eyes. >> Neuro told me that ms and cns lupus are very serious and that I will >> need to get treated right away.  That scared me.  Sometimes I feel like >> a ticking time bomb. I was so upset when I left I got sick.  After the >> neuro was done seeing me she told me to leave the room and that she >> needed to talk with my reg doc in private.  The nurse walked me out of >> the room so I asked her do I wait in the lobby or go home or what she >> said she didn’t know so I just went home.  I had alot of questions for >> my doctor and no one even told me when to get a follow up. >> And the lumbar puncture I am scared I am going to go to the hospital see >> the needle and say I am outta here and freak out.  My anxiety level is >> so high right now, I am scared plumb to death. >> And if neuro is right and I have the cns lupus and I have to be on >> chemo, will I be able to go outside, shopping, will I loose all my hair. >> Will I have to stay in doors all the time so I don’t risk catching a >> virus or getting sick?  My girls school plays, will I be able to go to >> them?  These are some of the questions I have and wanted to ask my >> doctor.  My reg doc is really cool, she is not a rhummey or a neuro just >> a reg md but to me she plays all three roles my rhummey does not consult >> with neuro and when he sends reports to my reg doc its a miracle.  I >> also have this cognitive thing going on witch neuro suspects is from a >> cns lupus involvement.  If anyone can please help or offer support >> please, let me know.  Neuro also said I have to have neuro tests >> preformed and I need to see a therapist.  Thanks in advance >> (((((((((hugs)))))) Melody

Response:

Question:

I’m a Lupie..whose not aware of what the INR rate means.. Am in a huge flare-up now.(since long-postponed Root-Canal work 6 wks. ago.) and wonderig whether it was idiotic to have gone since I’d not been in a bad flare-up for a year..and hadn’t been able to get to a Rheumatologist bcs of trying to avoid knee-replacement so stayed home to not stress my knee… Have been taking antibiotics 4 days a week.. bcs of Chronic Lyme Disease, Fibro and the tooth infection.. Now find I can’t tolerate Darvocet, anmore so just take Motin for the pain, but jut the day-to-day existing(waiting for food deliveries,repairmen) etc.. seems to prevent me from tracking down A Rheumy who will actually see me on a regular basis.. The one I had years ago left me on Prednisone for 3 yrs.. others have said " Well, you,ve had Lupus a long time.. so not much we can do." or they don’t like my insurance.. I’m about to give up.. have to take care of my dog’s needs and keeping the house and bills paid is just about doing me in.. Any ideas? I called the Lupus support group in my area (next county) for a ride to a mtg.. and there isn’t any… Thanks for any suggestions..and believe me, I’ve tried help from church, Seniors and civic groups.. My family are all out of states(in different states.. and… well, I’m depressing myself just writing this.. r..

Response:

<ruby…@webtv.net> wrote in message

<snip> I’m a Lupie..whose not aware of what the INR rate means.. </snip> RE: PT and INR Formally known as: Prothrombin Time and International Normalized Ratio Why is it done? To check how well blood-thinning medications (anti-coagulants) are working to prevent blood clots; to help detect and diagnose a bleeding disorder. When does your doctor ask for it? If you are taking an anti-coagulant drug or if your doctor suspects that you may have a bleeding disorder. HTH you out some! ALSO: <ruby…@webtv.net> wrote in message

 <snip> My family are all out of states(in different states.. and… well, I’m depressing myself just writing this.. </snip> Don’t feel bad Ruby…. we are all feeling a lot of stress at this time of year… I think it is the pressures we feel about trying to be like all the ‘healthy’ relatives and friends we see shopping, entertaining, baking, cleaning and doing all the other holiday activities, never mind having ‘fun’ and enjoying themselves through visits and get togethers with each other! (I too, can feel left out and even alone even when in a group situation!) It makes it so hard when you are sick chronically and can’t commit to dates or engagements ahead of time…. also spontaneity is out of the question cause it doesn’t always work…. so you live day by day and at times hour by hour…. I find holidays very difficult cause all year I am thinking that the rest of the family members get it and then when it comes down to the crunch? well, nope they sure do not understand the full implication of living with an illness or in my husband’s case, living with a chronically ill wife. Life is so much different for all of us than for our extended families and we just have to do what we can and try to forget about being like everyone else. Just know that we, the members of this group and other lupus patients, DO understand and that we are here as sounding boards whenever you need to rant or cry about things that upset you…. questions can be answered and problems can be listened to and at times solved here as well. Good luck to you, and happy holiday wishes to your household from mine! hugs from Shelagh

Response:

In article <EdFwd.510061$Pl.310850@pd7tw1no>, Shelagh <n…@myob.bc.ca> wrote [ > to help detect and diagnose a bleeding disorder.

I haven't heard lupus described in such mild terms for some time... -- Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

On Thu, 16 Dec 2004 05:51:52 +0000, Michael Roeper wrote (in article <Yn9wd.268332$R05.68875@attbi_s53>): Sorry Micheal I don’t understand all of your post, I assume it means you get clots very easily? Al I know is I have antiphospholipid syndrome and CNS lupus, and I need a lot of warfarin (coumadin) to have an effect on my INR. I am similar in that my INR will take weeks of testing and dose fiddling before it stabilises. I was on a theraputic range of 2 to 3 at first but I was still getting neurological symptoms, cognitive problems and fit like attacks, which is why I now have range 3 to 4.5 and also aspirin. I undersand the aspirin stops the platelets sticking together too? I am planning to request some other sort of heparin style treatment before my next dental work in March, but I have to see the doc first. Our NHS pays for treatment here in UK but they will only pay if they are convinced it is necessary so I may have to do some pushing. – Hide quoted text — Show quoted text ->I  I’ve got Lupus and really high-titer antiphospholipid syndrome too. My > projected INR is 3.5 to 4.5 as I can throw clots at an INR of 2.0. When I > need any kind of surgery I wean off Coumadin for 2 to3 days while taking > Lovenox injections. They’re expensive (about 70 bucks each, 2X a day) but I > have tons of em stored up from when I had insurance and they can > successfully operate on me with Lovenox in my system after the COumaden had > gone away. I then do the opposite after surgery, taking Lovenox injections > until my INR get’s back up there with Coumaden. When my INR gets"unstable," > it takes about 6 weeks of weekly testing (or even more often) till I get > stable again. My IGG titers are really, really high (over 300) > "herbwormwood" <herbwormw…@lycos.co.uk> wrote in message > news:0001HW.BDE472A0006648E9F02845B0@News.Individual.NET… >> Hi, >> I have regular dental work to treat gum problems and my dentists are >> insisting my INR must be lower than 2.5 for them to treat me. >> My consultant rheumatogist says my INR should be between 3 and 4.5 for me > to >> not have clots in my brain, I have antiphospholipid syndrome and lupus and >> many CNS impairments through the years I was not having treatment for it. > My >> current  treatment for the clots is warfarin and aspirin, it works well > for >> me when my INR is as it should be. My INR goes up and dpwn and usually I > have >> it tested weekly. Last dental work put tit down to 1.3. >> Anyone have similar problems or advice on this please? I feel alone as no > one >> seems to realise there is a problem except me.

Response:

I don’t know what part of my post you didn’t understand…..Lovenox is called "low weight" heparin. Kinda like "light beer," I would imagine. Your situation sounds identical to mine. "herbwormwood" <herbwormw…@lycos.co.uk> wrote in message

news:0001HW.BDE773B4000D830EF02845B0@News.Individual.NET… – Hide quoted text — Show quoted text -> On Thu, 16 Dec 2004 05:51:52 +0000, Michael Roeper wrote > (in article <Yn9wd.268332$R05.68875@attbi_s53>): > Sorry Micheal I don’t understand all of your post, I assume it means you get > clots very easily? > Al I know is I have antiphospholipid syndrome and CNS lupus, and I need a lot > of warfarin (coumadin) to have an effect on my INR. > I am similar in that my INR will take weeks of testing and dose fiddling > before it stabilises. I was on a theraputic range of 2 to 3 at first but I > was still getting neurological symptoms, cognitive problems and fit like > attacks, which is why I now have range 3 to 4.5 and also aspirin. I undersand > the aspirin stops the platelets sticking together too? > I am planning to request some other sort of heparin style treatment before my > next dental work in March, but I have to see the doc first. Our NHS pays for > treatment here in UK but they will only pay if they are convinced it is > necessary so I may have to do some pushing. > >I  I’ve got Lupus and really high-titer antiphospholipid syndrome too. My > > projected INR is 3.5 to 4.5 as I can throw clots at an INR of 2.0. When I > > need any kind of surgery I wean off Coumadin for 2 to3 days while taking > > Lovenox injections. They’re expensive (about 70 bucks each, 2X a day) but I > > have tons of em stored up from when I had insurance and they can > > successfully operate on me with Lovenox in my system after the COumaden had > > gone away. I then do the opposite after surgery, taking Lovenox injections > > until my INR get’s back up there with Coumaden. When my INR gets"unstable," > > it takes about 6 weeks of weekly testing (or even more often) till I get > > stable again. My IGG titers are really, really high (over 300) > > "herbwormwood" <herbwormw…@lycos.co.uk> wrote in message > > news:0001HW.BDE472A0006648E9F02845B0@News.Individual.NET… > >> Hi, > >> I have regular dental work to treat gum problems and my dentists are > >> insisting my INR must be lower than 2.5 for them to treat me. > >> My consultant rheumatogist says my INR should be between 3 and 4.5 for me > > to > >> not have clots in my brain, I have antiphospholipid syndrome and lupus and > >> many CNS impairments through the years I was not having treatment for it. > > My > >> current  treatment for the clots is warfarin and aspirin, it works well > > for > >> me when my INR is as it should be. My INR goes up and dpwn and usually I > > have > >> it tested weekly. Last dental work put tit down to 1.3. > >> Anyone have similar problems or advice on this please? I feel alone as no > > one > >> seems to realise there is a problem except me.

Response:

herbwormwood wrote: >  Last dental work put tit down to 1.3.

What else happened at or around that time?  Were you prescribed antibiotics before or after the dental work? Many of us get antibiotics in the meat we eat. Here’s more to consider http://www.fvleiden.org/ask/27.html J

Response:

I’ve got Lupus and really high-titer antiphospholipid syndrome too. My projected INR is 3.5 to 4.5 as I can throw clots at an INR of 2.0. When I need any kind of surgery I wean off Coumadin for 2 to3 days while taking Lovenox injections. They’re expensive (about 70 bucks each, 2X a day) but I have tons of em stored up from when I had insurance and they can successfully operate on me with Lovenox in my system after the COumaden had gone away. I then do the opposite after surgery, taking Lovenox injections until my INR get’s back up there with Coumaden. When my INR gets"unstable," it takes about 6 weeks of weekly testing (or even more often) till I get stable again. My IGG titers are really, really high (over 300) "herbwormwood" <herbwormw…@lycos.co.uk> wrote in message

news:0001HW.BDE472A0006648E9F02845B0@News.Individual.NET… – Hide quoted text — Show quoted text -> Hi, > I have regular dental work to treat gum problems and my dentists are > insisting my INR must be lower than 2.5 for them to treat me. > My consultant rheumatogist says my INR should be between 3 and 4.5 for me to > not have clots in my brain, I have antiphospholipid syndrome and lupus and > many CNS impairments through the years I was not having treatment for it. My > current  treatment for the clots is warfarin and aspirin, it works well for > me when my INR is as it should be. My INR goes up and dpwn and usually I have > it tested weekly. Last dental work put tit down to 1.3. > Anyone have similar problems or advice on this please? I feel alone as no one > seems to realise there is a problem except me.

Response:

Question:

ROFLOL, Mair you be so funny.. My spirit might get better but this old body sure is showing alot of wear and tear, been a horrible year here. Mair, I have more info to put on Pandora, art supplies can be very dangerous, and the petoleum based things are much of the ‘core’ of the problem. It seems the things that give us so much pleasure, often turn on us ( O just loved my beauty shop, still love the ’smells’ but , danger will robinson, brings me back to my senses. I wish you well and do hope you can keep your art going, even if you have to buile a safe box and just your hands go in, like you see in hospital premee wards. <Same Zinn, just old>

Response:

Pine Sol products or anything containing Pine are also a big problem for me. Or maybe because this time of year I am the most allergy sensitive.  I can not even do a live Christmas tree and have had to avert from going in some store entrances where the trees were lined up outside like sentries. Always, ..

Question:

Hi Carol, I looked for some info on panniculitis, but could not find much. I am glad to know that there is treatment for it. Gad, it is so hard when our appearance is changed too. I know I struggle with that part a lot. I think you said you were going to see Dr.Pollack. How did you like him/her ? Why is it that we seem to have to fight to get a diagnosis of lupus? This hormones/age/hysteria stuff is heard all too commonly. It is so much easier once we know what we are facing and get treatment. I hope things will be better for you now. BJ-Sk. Canada "saskie" <saskiehometow…@hotmail.com> wrote in message

news:10nt42o57hc1d49@corp.supernews.com… – Hide quoted text — Show quoted text -> Just home from the Dr. ; I have a lot of subcutaneous wasting, on my face, > top of both arms; this has been gradual and all Dr.s have said it is nerve > involvement of some sort??  Now I find out it is lupus profundus ; at least > now I know what it is and there is treatment; however what has been lost > will never recover.  Hopefully it will spare the rest of my face so I do not > look too freakish. > What a nightmare it is to get a diagnosis rather than an opinion; as in , > hormones, age, hysteria blah , blah.  Also have the antiphosphoid deal going > on and will start Coumadin tomorrow. >   My husband has Non Hodgkin’s Lymphoma so I have been sort of ignoring my > symptoms until I developed small flat lumps in the subcutaneous area that > are very painful.  Hubby offered me some of his chemo pills but I took a > pass. > Saskie/Carol

Response:

Just home from the Dr. ; I have a lot of subcutaneous wasting, on my face, top of both arms; this has been gradual and all Dr.s have said it is nerve involvement of some sort??  Now I find out it is lupus profundus ; at least now I know what it is and there is treatment; however what has been lost will never recover.  Hopefully it will spare the rest of my face so I do not look too freakish. What a nightmare it is to get a diagnosis rather than an opinion; as in , hormones, age, hysteria blah , blah.  Also have the antiphosphoid deal going on and will start Coumadin tomorrow.   My husband has Non Hodgkin’s Lymphoma so I have been sort of ignoring my symptoms until I developed small flat lumps in the subcutaneous area that are very painful.  Hubby offered me some of his chemo pills but I took a pass. Saskie/Carol

Response:

Question:

I cannot believe this! Your post may as well be mine.  I fgured the exact same thing. my pointer fingers and my middle fingers on both hands curl down just like you decribed!  I was dx with lupus a couple of months ago,and have my first appt. with rhummy the twenty third of this month.  I just had to tell you how ammazing it felt to have anyone else have weird fingernails. Do you know if there is anything that can be done for them?  Just dreaming I guess.  I wis Mine were STRAIGT!!! Sucess is simply a matter of luck.  Ask any failure.

Response:

I know this is a silly question, but which way do they curl? The sides of my nails curl under and in towards the middle of my nail, but I thought it was just normal. Julie – Hide quoted text — Show quoted text -DeForest76 wrote: > When I first went in to see my first Rheumy….one of the first things he did > after listening to me discribe my symptoms, was to look at my > fingernails….which have always curled under once they start to grow out just > a little bit.  He looked at them and said…"Lupus".  That was even before he > did any blood work….which eventually proved his diagnosis.  I always thought > that my nails curled like that because when I was younger, I use to be a nail > biter.  Once I got older, though, I stopped biting them.  Just thought that > with all the biting I did on them, that I had perhaps damaged them in some way. >  He said no….the curling was a "classic" sign of Lupus. > De76

Response:

>When I first went in to see my first Rheumy….one of the first things he did >after listening to me discribe my symptoms, was to look at my >fingernails….which have always curled under once they start to grow out >just >a little bit.  He looked at them and said…"Lupus".  That was even before he >did any blood work….which eventually proved his diagnosis.

My rheumy also checked out my nails…but what he commented on was the amount of cuticle (despite the fact that I’d had a manicure within the week).  I wonder if anyone else has a cuticle diagnosis?

Response:

I have had lupus for four years the last few mounths my fingernails have lines going down them they look like they are going to split plus the nails are getting thick has anyone had the same problem Jim

Response:

Jim, I have heard of this before, and it can be related to Lupus. Donna – Hide quoted text — Show quoted text -JKMartin35 wrote in message <19990305105804.03250.00003…@ng42.aol.com>… >I have had lupus for four years the last few mounths my fingernails have lines >going down them they look like they are going to split plus the nails are >getting thick has anyone had the same problem Jim

Response:

Jim, I’ve the same finger nail condition that you spoke for several months. Actually…. since about 3 months before I was diagnosed with SLE.  I don’t know if it’s related to Lupus or not.  Mine seem to get the crack lines and split easily for a few months, then they are normal for a while. -Paul My reply address is false. Please post replies to this news group. If you need to e-mail me, it’s scanguy at home dot com – Hide quoted text — Show quoted text -JKMartin35 wrote in message <19990305105804.03250.00003…@ng42.aol.com>… >I have had lupus for four years the last few mounths my fingernails have lines >going down them they look like they are going to split plus the nails are >getting thick has anyone had the same problem Jim

Response:

>I have had lupus for four years the last few mounths my fingernails have >lines >going down them they look like they are going to split plus the nails are >getting thick has anyone had the same problem

Whenever i have a flare my nails always get very brittle and break. i have no idea why, but they do. Otherwise, they are always very long and healthy. it’s strange.

Response:

You are not alone!!!!!!!   I had 3 nails on one hand which were almost gone. I finally went to my dermatologist and he said I had a viral fungus which caused the problems with my nails and itchy feet. He prescribed Sporanox for the fungus infection. It is a 3 month program one week on meds, three weeks off. It worked great. It took about 4 months for my fingernails to grow out. They are completely normal now. It’s been 13 months since first treatment for my nails and all is well. I have to do it again to help with my toenails. They grow slower than the fingernails. Ask your doctor what he thinks…   BTW my dermatologist was the one who Dx’d my discoid lupus over 8 years ago. Good luck,             Zibby

Response:

JKMartin35 wrote: > I have had lupus for four years the last few mounths my fingernails have lines > going down them they look like they are going to split plus the nails are > getting thick has anyone had the same problem Jim

  Me too.  Don’t know why, but I do too. George

Response:

When I first went in to see my first Rheumy….one of the first things he did after listening to me discribe my symptoms, was to look at my fingernails….which have always curled under once they start to grow out just a little bit.  He looked at them and said…"Lupus".  That was even before he did any blood work….which eventually proved his diagnosis.  I always thought that my nails curled like that because when I was younger, I use to be a nail biter.  Once I got older, though, I stopped biting them.  Just thought that with all the biting I did on them, that I had perhaps damaged them in some way.  He said no….the curling was a "classic" sign of Lupus. De76

Response:

besides the normal or abnormal debriding of fingers and the seemingly, lack of circulation to the tips, I was wondering if anyone here is having problems of the nails detaching to the sides of the fingernail.  This has happened to me on two fingers now and am wondering if this is something which is preceeding worser future issues (love the grammaw, hey?). not sure if this is the lupus, ra or raynauds, which really is not much of an issue for me as I live here in too hot Florida. anyone have any ideas of what could be the cause and how to help it? am not vitamin deficient but it seems more and more, I am losing circulation to fingertips.  I might have to start hen pecking this keyboard.. hahhahahah.  wish i had barbra streisand’s nose! Always, cloud

Response:

Hi Cloud, I have had problems with finger and toenails for years. Early on, I thought it was due to my thyroid. My thyroid has been stable for a number of years now, but the nail problem is still there. My nails bubble up and pull away from the nail bed at the edges. That produces a very ugly nail that I hide under a bandaid when I am going out somewhere.( I am a classy chick. <g>) I really don’t know what causes this. I do have Raynaud’s, and my circulation is bad. That could be a contributing factor. At one time J posted a site that had pictures and causes of various nail conditions. Perhaps she will read your post and be able to help. Sorry I don’t have any suggestions for you. BJ-Sk. Canada "cloud" <pjas…@cfl.rr.com> wrote in message

news:Rawdd.27806$yP2.1068@tornado.tampabay.rr.com… – Hide quoted text — Show quoted text -> besides the normal or abnormal debriding of fingers and the seemingly, lack > of circulation to the tips, I was wondering if anyone here is having > problems of the nails detaching to the sides of the fingernail.  This has > happened to me on two fingers now and am wondering if this is something > which is preceeding worser future issues (love the grammaw, hey?). > not sure if this is the lupus, ra or raynauds, which really is not much of > an issue for me as I live here in too hot Florida. > anyone have any ideas of what could be the cause and how to help it? > am not vitamin deficient but it seems more and more, I am losing circulation > to fingertips.  I might have to start hen pecking this keyboard.. > hahhahahah.  wish i had barbra streisand’s nose! > Always, > cloud

Response:

BJ wrote: > . At one time J posted a site > that had pictures and causes of various nail conditions.

If I saved it/them, I can’t find them. here’s a few http://www.healthcentral.com/mhc/top/003247.cfm http://dermnetnz.org/hair-nails-sweat/onycholysis.html http://dermatlas.med.jhmi.edu/derm/ (I think this is the good one, but I don’t know where to go from the main page) http://dermatlas.med.jhmi.edu/derm/result.cfm?Category=9 http://dermatlas.med.jhmi.edu/derm/result.cfm?Diagnosis=996775730 maybe she can poke around there.. J

Response:

"cloud" <pjas…@cfl.rr.com> wrote in message

news:Rawdd.27806$yP2.1068@tornado.tampabay.rr.com…  I am losing circulation > to fingertips.  I might have to start hen pecking this keyboard.. > hahhahahah.  wish i had barbra streisand’s nose! > Always, > cloud

If you had Barbara Streisand’s nose, you’d be losing circulation in that, too! M

Response:

Thanks BJ, J and so on, so on… I have a great pictoral book called, "Nails," and the only thing which comes close is a picture for Raynaud’s. It said the finger tips narrow to a point like and it probably is the Raynaud’s.  Don’t feel like getting that added on my list… ya know?  Just in Florida, it is not a major issue with cold.  Except, my hands say it is cold when it is 60 degrees.  Do you northeners all wear gloves when it gets to be about this cold?  Yes, 60 degrees is cold for this ol’ Floridian… haha! Always, cloud "J" <vers…@anon.anon> wrote in message

news:4176D452.A5D445D3@execulink.com… – Hide quoted text — Show quoted text -> BJ wrote: >> . At one time J posted a site >> that had pictures and causes of various nail conditions. > If I saved it/them, I can’t find them. > here’s a few > http://www.healthcentral.com/mhc/top/003247.cfm > http://dermnetnz.org/hair-nails-sweat/onycholysis.html > http://dermatlas.med.jhmi.edu/derm/ (I think this is the good one, but I > don’t > know where to go from the main page) > http://dermatlas.med.jhmi.edu/derm/result.cfm?Category=9 > http://dermatlas.med.jhmi.edu/derm/result.cfm?Diagnosis=996775730 > maybe she can poke around there.. > J

Response:

cloud wrote: > Thanks BJ, J and so on, so on… > I have a great pictoral book called, "Nails," and the only thing which comes > close is a picture for Raynaud’s. > It said the finger tips narrow to a point like and it probably is the > Raynaud’s.  Don’t feel like getting that added on my list… ya know?  Just > in Florida, it is not a major issue with cold.  Except, my hands say it is > cold when it is 60 degrees.  Do you northeners all wear gloves when it gets > to be about this cold?  Yes, 60 degrees is cold for this ol’ Floridian… > haha!

I do. Good to read that you have a reference book. We’ll have to remember that when others ask (about nail issues). Hugs and stay warm ! J

Response:

OK Cloud.  I will write more late but in a rush. where are you in Florida, we are heading to the state come Late December. We will be near or around Tampa. IS that near you? well? janers

Response:

"cloud" <pjas…@cfl.rr.com> wrote in message <news:IAPdd.23713$vZ5.7135@tornado.tampabay.rr.com>…

<snip> > in Florida, it is not a major issue with cold.  Except, my hands say it is > cold when it is 60 degrees.  Do you northeners all wear gloves when it gets > to be about this cold?  Yes, 60 degrees is cold for this ol’ Floridian…

If I’m feeling under the weather at all and especially if I’m in a flare, my hands hurt when they feel cold — and that’s usually inside, where the temperature is rarely less than 64 degrees and more often in the 70s-80s with winter overheating. Oddly, my hands don’t mind being outdoors in far colder temps, even if the gloves and/or mittens aren’t keeping them warm enough. My fingers get stiff and numb, but they don’t hurt like they do indoors. For those painful indoor times, which usually occur at work, I’ve taken to keeping two pairs of old stretch-knit, one-size-fits-all gloves in the inner pockets of my winter coat. Most of these gloves’ fingertips have worn off, so I can function reasonably, even if I’m filing or doing other fine motor work. One set is black and the other screaming magenta. Between the two colors, I usually find a pair that blends with the clothes I’m wearing, so they’re not too obvious.

Response:

Question:

In article <dzibd.713404$M95.292105@pd7tw1no>, Shelagh <tidering…@shaw.ca> wrote [ >J hi, the disclosure link is NOT personal lol, it ison the homepage, the >right frame, >.... there are four links along the bottom row: >'disclosure', 'lupus info', 'related sites' and 'send email' >They are 'rectangles' like the 'homepage button' at the top of the left >frame, the directory.... it is there and it works... i know that the >homepage looks like all pictures but does have the 4 functioning links on >it..lol.

There may be some people whose browsers or security settings prevent it working. -- Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

TY!  :-) ~Shelagh – Hide quoted text — Show quoted text -"Andy" <a…@kitzbuhel.demon.co.uk> wrote in message > I’m honoured! > — > Andy Taylor [Chair, N E Lupus Group] > See http://www.northeastlupus.org.uk for more!

Response:

Shelagh wrote: > I liked it so much that I put it on my ‘disclosure’ webpage

Hi Shelagh, I’d like to thank you for the requested additions to your webpage. Everytime I went back, there was something new and better. You’re sure fast and efficient. I did have a look and (however) cannot find "disclosure" webpage. Is that something private? or if on the Lupus website, where is it, Please? Thanks and hugs to Shelagh in BC J

Response:

Shelagh wrote: > J hi, the disclosure link is NOT personal lol, it ison the homepage, the > right frame, > …. there are four links along the bottom row: > ‘disclosure’, ‘lupus info’, ‘related sites’ and ’send email’ > They are ‘rectangles’ like the ‘homepage button’ at the top of the left > frame, the directory…. it is there and it works… i know that the > homepage looks like all pictures but does have the 4 functioning links on > it..lol. > It is no problem at all with updates… any suggestions from anyone are > welcome re my site… I take constructive criticism ‘very well’ <g> and have > just downloaded a free ‘form builder’ from ‘quask’ > that I hope to use to make and then embed a feedback form on a new page > strictly for that reason… anyhow, good luck finding it <smile> > hugs from Shelagh

Thanks Shelagh, I found it. It’s right at the bottom of the main page. Either I’m so used to looking at the left sidebar or it wasn’t there. Hard to say because sometimes I use one of three browsers and as Andy mentions some browsers or security settings may prevent seeing it.  I tried mucking around with mine a few months ago, then figured "I don’t know the implications of what I’m doing and/or how do I make all 3 consistent".. LOL. I gave up. Hugs Shelagh J

Response:

Susie wrote: > Barbara, > I agree.  I’m new, just diagnosed.  With not many family to discuss it > with.  They don’t understand it, so I printed info out to explain it so > it didn’t sound like I was "complaining" or "making excuses".  I was so > happy to see this newsgroup as there are no support groups in my > town….much less people who know about or understand my symptoms or > accept me for who I am.  I hold onto hope during those tough times, and > praise the days that I feel like I can get out of bed and go for a walk! >   So sitting here for hours reading other’s comments, stories, etc. is > very therapeutic for me!  I hope it is for you too.  Susie

Welcome Susie ! Andy has an idea for a card (to be shown to others). He posted about it earlier. If you didn’t see the post, perhaps he would repost it for you. Talk to us anytime. J

Response:

Hi Susie and Barbara,  welcome to the group. Dawn "J" <espa…@example.net> wrote in message

news:41650216.CA57A3CF@execulink.com… – Hide quoted text — Show quoted text -> Susie wrote: >> Barbara, >> I agree.  I’m new, just diagnosed.  With not many family to discuss it >> with.  They don’t understand it, so I printed info out to explain it so >> it didn’t sound like I was "complaining" or "making excuses".  I was so >> happy to see this newsgroup as there are no support groups in my >> town….much less people who know about or understand my symptoms or >> accept me for who I am.  I hold onto hope during those tough times, and >> praise the days that I feel like I can get out of bed and go for a walk! >>   So sitting here for hours reading other’s comments, stories, etc. is >> very therapeutic for me!  I hope it is for you too.  Susie > Welcome Susie ! > Andy has an idea for a card (to be shown to others). He posted about it > earlier. > If you didn’t see the post, perhaps he would repost it for you. > Talk to us anytime. > J

—-== Posted via Newsfeeds.Com – Unlimited-Uncensored-Secure Usenet News==—- http://www.newsfeeds.com The #1 Newsgroup Service in the World! >100,000 Newsgroups —= East/West-Coast Server Farms – Total Privacy via Encryption =—

Response:

In article <41650216.CA57A…@execulink.com>, J <espa…@example.net> wrote [ >Welcome Susie ! >Andy has an idea for a card (to be shown to others). He posted about it >earlier. >If you didn't see the post, perhaps he would repost it for you. >Talk to us anytime. >J

It was this, which could go on a credit-card sized piece of paper. LUPUS: v is for life - treatable, but never curable v can be fatal v mimics other illnesses v can take years to diagnose v is not infectious v can attack and destroy almost any organ in the body v a disease with 1000 faces v is not just "a women's disease" v is painful and debilitating v you look so well - you feel so ill Systemic Lupus Erythematosus   - hard to say, harder to live with ## Contact info for %your country% ## -- Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

Okay so how do you pronounce "Erythematosus" ? Why am I asking someone across the pond???  LOL Bev "Andy" <a…@kitzbuhel.demon.co.uk> wrote in message

news:aT05Z1KM0taBFw9G@kitzbuhel.demon.co.uk… – Hide quoted text — Show quoted text -> In article <41650216.CA57A…@execulink.com>, J <espa…@example.net> > wrote > [ > >Welcome Susie ! > >Andy has an idea for a card (to be shown to others). He posted about it > >earlier. > >If you didn't see the post, perhaps he would repost it for you. > >Talk to us anytime. > >J > It was this, which could go on a credit-card sized piece of paper. > LUPUS: > v is for life - treatable, but never curable > v can be fatal > v mimics other illnesses > v can take years to diagnose > v is not infectious > v can attack and destroy almost any organ in the body > v a disease with 1000 faces > v is not just "a women's disease" > v is painful and debilitating > v you look so well - you feel so ill > Systemic Lupus Erythematosus >   - hard to say, harder to live with > ## Contact info for %your country% ## > -- > Andy Taylor [Chair, N E Lupus Group] > See http://www.northeastlupus.org.uk for more!

Response:

In article <YqIad.6649$Mh7.5961@trnddc04>, Beverley <beverly.brow…@verizon.net> wrote >Okay so how do you pronounce "Erythematosus" ?

Carefully — Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

Thanks Andy, I liked it so much that I put it on my ‘disclosure’ webpage if you don’t mind my using it? hugs, from Shelagh – Hide quoted text — Show quoted text -"> Andy wrote: >> IIt was this, which could go on a credit-card sized piece of paper. >> LUPUS: >> v is for life – treatable, but never curable >> v can be fatal >> v mimics other illnesses >> v can take years to diagnose >> v is not infectious >> v can attack and destroy almost any organ in the body >> v a disease with 1000 faces >> v is not just "a women’s disease" >> v is painful and debilitating >> v you look so well – you feel so ill >> Systemic Lupus Erythematosus >>   – hard to say, harder to live with >> ## Contact info for %your country% ##

Response:

In article <84Vad.724403$gE.211737@pd7tw3no>, Shelagh <tidering…@shaw.ca> wrote >Thanks Andy, >I liked it so much that >I put it on my ‘disclosure’ webpage >if you don’t mind my using it?

I’m honoured! — Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

Welcome Barbara – I am not sure if you have posted in the past – forgive me if you have. Please feel free to post any of your struggles, to vent, to whine… or even just talk about something totally off the topic of Lupus or being sick. I have found much comfort in the people here. Hope to hear more from you. Steph "Barbara Dillener" <Irish_…@webtv.net> wrote in message

news:3800-4160C921-68@storefull-3113.bay.webtv.net… – Hide quoted text — Show quoted text -> Just wanted to say how glad I am that there is a group you can talk to > when things get bad. Lupus is hard enough to deal with at times, but > when you don’t have someone to talk to its worse. > Barbara

Response:

Barbara, I agree.  I’m new, just diagnosed.  With not many family to discuss it with.  They don’t understand it, so I printed info out to explain it so it didn’t sound like I was "complaining" or "making excuses".  I was so happy to see this newsgroup as there are no support groups in my town….much less people who know about or understand my symptoms or accept me for who I am.  I hold onto hope during those tough times, and praise the days that I feel like I can get out of bed and go for a walk!   So sitting here for hours reading other’s comments, stories, etc. is very therapeutic for me!  I hope it is for you too.  Susie – Hide quoted text — Show quoted text -Barbara Dillener wrote: > Just wanted to say how glad I am that there is a group you can talk to > when things get bad. Lupus is hard enough to deal with at times, but > when you don’t have someone to talk to its worse. > Barbara

Response:

Just wanted to say how glad I am that there is a group you can talk to when things get bad. Lupus is hard enough to deal with at times, but when you don’t have someone to talk to its worse. Barbara

Response:

Barbara Dillener wrote: > Just wanted to say how glad I am that there is a group you can talk to > when things get bad. Lupus is hard enough to deal with at times, but > when you don’t have someone to talk to its worse.

Hi Barbara, You can talk to us anytime. You’ll find sympathetic, caring readers here. Are things tough for you at the moment? Many hugs J

Response:

Hi Barbara, This is a good group. It has been very helpful to me. We would be glad to have you talk to us at any time. Tell us about yourself, if you would like to share some details. BJ-Sk. Canada "Barbara Dillener" <Irish_…@webtv.net> wrote in message

news:3800-4160C921-68@storefull-3113.bay.webtv.net… – Hide quoted text — Show quoted text -> Just wanted to say how glad I am that there is a group you can talk to > when things get bad. Lupus is hard enough to deal with at times, but > when you don’t have someone to talk to its worse. > Barbara

Response:

Question:

That sounds like a reasonable explanation Timothy. The high platelet count is a good thing, to be sure. I just like to try to figure things out. Thanks for the help. BJ-Sk. Canada "Timothy Luders" <tjlud…@myrealbox.com> wrote in message

news:12dbk9zy3yg96$.dlg@tandelshome.attbi.invalid… – Hide quoted text — Show quoted text -> On Wed, 21 Jul 2004 19:18:41 -0400, janers wrote: > > Well gee, KCat and Sherry said it all.  Thanks from me too, cause that > > always confused me .. > > BJ, you sed rate might be up due to the Shingles too, did the doc mention > > that?  How are you feeling other wise?  Less pain? > > Let’s hope you start feeling better soon and things turn around for you. > > That stuff has to hurt and I am sure you already KNOW that one… > > Hang in there. > > janers > A complete guess here. You’re platelet production went up with the onset of > shingles. Now that you’re recovering the production has returned to you’re > normal so the average size is small (more older platelets). As I said just > a guess. At any rate it seems that lupus is not actively destroying > platelets at this time, a good thing. > Timothy

Response:

- Hide quoted text — Show quoted text -On Wed, 21 Jul 2004 20:18:13 -0600, BJ wrote: > That sounds like a reasonable explanation Timothy. The high platelet count > is a good thing, to be sure. I just like to try to figure things out. Thanks > for the help. > BJ-Sk. Canada > "Timothy Luders" <tjlud…@myrealbox.com> wrote in message > news:12dbk9zy3yg96$.dlg@tandelshome.attbi.invalid… >> On Wed, 21 Jul 2004 19:18:41 -0400, janers wrote: >>> Well gee, KCat and Sherry said it all.  Thanks from me too, cause that >>> always confused me .. >>> BJ, you sed rate might be up due to the Shingles too, did the doc > mention >>> that?  How are you feeling other wise?  Less pain? >>> Let’s hope you start feeling better soon and things turn around for you. >>> That stuff has to hurt and I am sure you already KNOW that one… >>> Hang in there. >>> janers >> A complete guess here. You’re platelet production went up with the onset > of >> shingles. Now that you’re recovering the production has returned to you’re >> normal so the average size is small (more older platelets). As I said just >> a guess. At any rate it seems that lupus is not actively destroying >> platelets at this time, a good thing. >> Timothy

Just remebering Linda’s first symptoms: ITP, bruises, very low platelet count (I don’t think quite as low as yours went), and all large. Timothy

Response:

How is Linda doing these days? Are you still enjoying your dancing? Hope all is well at your end. I get the bruising too, when my platelets get very low. It looks like someone splashed dark paint down my legs. I could actually see it spreading. Not a pretty sight. The pressure from sitting on the sofa would cause bleeding. Really weird! No risk of that now, thank goodness. Give my regards to Linda. It is always good to hear from you. BJ-Sk. Canada "Timothy Luders" <tjlud…@myrealbox.com> wrote in message

news:j9aeqvgk4yzr$.dlg@tandelshome.attbi.invalid… – Hide quoted text — Show quoted text -> On Wed, 21 Jul 2004 20:18:13 -0600, BJ wrote: > > That sounds like a reasonable explanation Timothy. The high platelet count > > is a good thing, to be sure. I just like to try to figure things out. Thanks > > for the help. > > BJ-Sk. Canada > > "Timothy Luders" <tjlud…@myrealbox.com> wrote in message > > news:12dbk9zy3yg96$.dlg@tandelshome.attbi.invalid… > >> On Wed, 21 Jul 2004 19:18:41 -0400, janers wrote: > >>> Well gee, KCat and Sherry said it all.  Thanks from me too, cause that > >>> always confused me .. > >>> BJ, you sed rate might be up due to the Shingles too, did the doc > > mention > >>> that?  How are you feeling other wise?  Less pain? > >>> Let’s hope you start feeling better soon and things turn around for you. > >>> That stuff has to hurt and I am sure you already KNOW that one… > >>> Hang in there. > >>> janers > >> A complete guess here. You’re platelet production went up with the onset > > of > >> shingles. Now that you’re recovering the production has returned to you’re > >> normal so the average size is small (more older platelets). As I said just > >> a guess. At any rate it seems that lupus is not actively destroying > >> platelets at this time, a good thing. > >> Timothy > Just remebering Linda’s first symptoms: ITP, bruises, very low platelet > count (I don’t think quite as low as yours went), and all large. > Timothy

Response:

- Hide quoted text — Show quoted text -On Thu, 22 Jul 2004 05:55:56 -0600, BJ wrote: > How is Linda doing these days? Are you still enjoying your dancing? Hope all > is well at your end. I get the bruising too, when my platelets get very low. > It looks like someone splashed dark paint down my legs. I could actually see > it spreading. Not a pretty sight. The pressure from sitting on the sofa > would cause bleeding. Really weird! No risk of that now, thank goodness. > Give my regards to Linda. It is always good to hear from you. > BJ-Sk. Canada > "Timothy Luders" <tjlud…@myrealbox.com> wrote in message > news:j9aeqvgk4yzr$.dlg@tandelshome.attbi.invalid… >> On Wed, 21 Jul 2004 20:18:13 -0600, BJ wrote: >>> That sounds like a reasonable explanation Timothy. The high platelet > count >>> is a good thing, to be sure. I just like to try to figure things out. > Thanks >>> for the help. >>> BJ-Sk. Canada >>> "Timothy Luders" <tjlud…@myrealbox.com> wrote in message >>> news:12dbk9zy3yg96$.dlg@tandelshome.attbi.invalid… >>>> On Wed, 21 Jul 2004 19:18:41 -0400, janers wrote: >>>>> Well gee, KCat and Sherry said it all.  Thanks from me too, cause that >>>>> always confused me .. >>>>> BJ, you sed rate might be up due to the Shingles too, did the doc >>> mention >>>>> that?  How are you feeling other wise?  Less pain? >>>>> Let’s hope you start feeling better soon and things turn around for > you. >>>>> That stuff has to hurt and I am sure you already KNOW that one… >>>>> Hang in there. >>>>> janers >>>> A complete guess here. You’re platelet production went up with the > onset >>> of >>>> shingles. Now that you’re recovering the production has returned to > you’re >>>> normal so the average size is small (more older platelets). As I said > just >>>> a guess. At any rate it seems that lupus is not actively destroying >>>> platelets at this time, a good thing. >>>> Timothy >> Just remebering Linda’s first symptoms: ITP, bruises, very low platelet >> count (I don’t think quite as low as yours went), and all large. >> Timothy

Would have replied last night BJ, but Linda and I were out square dancing. Have you’re legs cleared up? Linda’s have looked like the dark splashed paint for years now. She rarely goes out without having them covered (Oh, vanity LOL). Docs wanted to accuse me of abuse back then. They changed their tune rapidly when they saw how easily she "bruised". We’re waiting for an MRI and results on Monday. Kind of sitting on pins and needles right now. Will let you know. Linda had no appetite for the first half of this year and had lost a lot of weight. Problem seems to have gone away so we are hoping for the best. I’ll give you more details on Monday or Tuesday. Timothy

Response:

Hi Timothy, Yes, my legs look better, but I keep them covered too. Please do let my know about Linda’s MRI. I will be hoping for good news too. Tell Linda that. Glad to hear you are still out dancing. That is one of the best reason for a slow reply. <g> I like that. I still have the shingles lesions and pain after four weeks. I wonder if the immune suppressing drugs are slowing down the healing process. Oh well. Things have been worse. BJ-Sk. Canada "Timothy Luders" <tjlud…@myrealbox.com> wrote in message

news:iegu11q2uook$.dlg@tandelshome.attbi.invalid… – Hide quoted text — Show quoted text -> On Thu, 22 Jul 2004 05:55:56 -0600, BJ wrote: > > How is Linda doing these days? Are you still enjoying your dancing? Hope all > > is well at your end. I get the bruising too, when my platelets get very low. > > It looks like someone splashed dark paint down my legs. I could actually see > > it spreading. Not a pretty sight. The pressure from sitting on the sofa > > would cause bleeding. Really weird! No risk of that now, thank goodness. > > Give my regards to Linda. It is always good to hear from you. > > BJ-Sk. Canada > > "Timothy Luders" <tjlud…@myrealbox.com> wrote in message > > news:j9aeqvgk4yzr$.dlg@tandelshome.attbi.invalid… > >> On Wed, 21 Jul 2004 20:18:13 -0600, BJ wrote: > >>> That sounds like a reasonable explanation Timothy. The high platelet > > count > >>> is a good thing, to be sure. I just like to try to figure things out. > > Thanks > >>> for the help. > >>> BJ-Sk. Canada > >>> "Timothy Luders" <tjlud…@myrealbox.com> wrote in message > >>> news:12dbk9zy3yg96$.dlg@tandelshome.attbi.invalid… > >>>> On Wed, 21 Jul 2004 19:18:41 -0400, janers wrote: > >>>>> Well gee, KCat and Sherry said it all.  Thanks from me too, cause that > >>>>> always confused me .. > >>>>> BJ, you sed rate might be up due to the Shingles too, did the doc > >>> mention > >>>>> that?  How are you feeling other wise?  Less pain? > >>>>> Let’s hope you start feeling better soon and things turn around for > > you. > >>>>> That stuff has to hurt and I am sure you already KNOW that one… > >>>>> Hang in there. > >>>>> janers > >>>> A complete guess here. You’re platelet production went up with the > > onset > >>> of > >>>> shingles. Now that you’re recovering the production has returned to > > you’re > >>>> normal so the average size is small (more older platelets). As I said > > just > >>>> a guess. At any rate it seems that lupus is not actively destroying > >>>> platelets at this time, a good thing. > >>>> Timothy > >> Just remebering Linda’s first symptoms: ITP, bruises, very low platelet > >> count (I don’t think quite as low as yours went), and all large. > >> Timothy > Would have replied last night BJ, but Linda and I were out square dancing. > Have you’re legs cleared up? Linda’s have looked like the dark splashed > paint for years now. She rarely goes out without having them covered (Oh, > vanity LOL). Docs wanted to accuse me of abuse back then. They changed > their tune rapidly when they saw how easily she "bruised". > We’re waiting for an MRI and results on Monday. Kind of sitting on pins and > needles right now. Will let you know. Linda had no appetite for the first > half of this year and had lost a lot of weight. Problem seems to have gone > away so we are hoping for the best. I’ll give you more details on Monday or > Tuesday. > Timothy

Response:

Hi Everybody, I have last months lab results in my hand. What is the MPV? What is the significance of a below normal reading? There are my usual abnormal results, but this is a new one. My Sed rate is higher than usual at 67. Any ideas would be welcome. I am still in shingles pain, but the lesions are drying and don’t look so ruddy red. BJ-Sk. Canada

Response:

"BJ" <B…@sk.nojunk.ca> wrote in message

news:10ftl2c1410an8c@corp.supernews.com… > Hi Everybody, > I have last months lab results in my hand. What is the MPV? What is the > significance of a below normal reading? There are my usual abnormal results, > but this is a new one. My Sed rate is higher than usual at 67. Any ideas > would be welcome. I am still in shingles pain, but the lesions are drying > and don’t look so ruddy red. > BJ-Sk. Canada

From "Lab Tests Online"  http://www.labtestsonline.org/ "The platelet count is the number of platelets in a given volume of blood. Both increases and decreases can point to abnormal conditions of excess bleeding or clotting. Depending on the laboratory’s report forms, platelets are reported as thousands in a microliter of blood (150,000/