Lupus FAQ

Question:

I was curious about that myself and was gonna ask the ENT tomorrow.  Wow that is a pretty staggering % of failure, if you will.  I am waiting on a callback from a doctor that does the Pillar Procedure. whom I call Friday. Hopefully I will here from them tomorrow that way I can get a consultation on that one as well. That is true on the 100% recover. Thank you.  I’m glad it is helping as well.  My doc did advise me that I cannot stay on the Prednisone for too long plus also read the same online. This one is where I take 4 pills for 3 days, 3 for 3 days, 2 for 3 days and finally 1 for 3 days.  I am on day 3 of these so starting tomorrow I will start the slow ramping.  We will see where we go from there and also what the Rheumatologist says on Feb 28th.  Sure would be nice to know what this is. So what have they been telling your brother?  Hopefully they will find out how to treat his as well.  Good luck. Tommy "Tiger Lily" <m…@privacy.com> wrote in message

news:3659aeF48mfd6U1@individual.net… – Hide quoted text — Show quoted text -> oh Tommy > research the surgery ’success rate’ for treating sleep apnea > within 5 yrs of the initial surgery something like 80 or 90% of the apnea > patients are back on CPAP > the ‘pillar’ surgery remains to be seen….. we are waiting for reports > back > and over time we will find out what THAT success rate is > if ANY surgeon guarantees 100% recover, RUN , don’t walk away from them!! > they are lying to you > good luck finding out about the swelling…. glad to hear the cortisone is > helping…. but you don’t want to stay on that med long term…….. when > do > you start ramping down on your dose????? > kate > "Tommy Ferrell" <tferre…@austin.rr.com> wrote in message > news:Q1eLd.89039$Ta2.31792@fe2.texas.rr.com… >> I hope they can find out something because it is just not normal.  I also >> hope they can find a treatment.  When they came back with my blood >> results >> they told me that my Thyroid, Kidney, Liver, Heart and such was > functioning >> properly and also the my blood sugar levels were great along with my >> cholestiral were fine.  So I guess my organs are functioning the way they >> should for now.  They only thing that was not with normal range was my >> Lymphocytes which were high and they assumed it was from my allergies so >> they gave me Flonase and Allergra which have helped. >> One odd thing is I have a co-worker that doesn’t even work in the same >> building as I and she is now going through the same stages as I did.  She >> went to the doc, they took 3 tubes of blood and then advised that she was >> fine as well.  They did give her the same meds, Methylpredsinole. >> Last week after my steroid treatment started to wear off, my symptoms >> came >> back but included my face this time.  I went back to the doc as I > mentioned >> in my below response.  This time they gave me a 16 day treatment of >> Prednisone which have helped my symptoms a little, just like the >> Methylprednisolone but at least my face isn’t hurting…  So now I will > wait >> to see what they tell me tomorrow. >> I also have an appointment tomorrow with the ENT specialist to check on >> surgery options for my sleep apnea.  Then on Wednesday I go back to my >> Neurologist to get set up with a CPAP and such… >> Too many things at once.  Anyways thank you for your thoughts. >> Tommy >> "Tiger Lily" <m…@privacy.com> wrote in message >> news:364pmeF4u2kd7U1@individual.net… >> > "Tommy Ferrell" <tferre…@austin.rr.com> wrote in message >> > news:SJ%Kd.6872$V51.6468@fe1.texas.rr.com… >> >> Well my first 5 tubes of blood came back clean so they put me on >> >> Methylprednisolone for 6 days.  The steroid helped for the first 4 >> >> days >> > then >> >> my symptoms started to come back.  So back to the doc I went this past >> >> Thursday and they took 3 more tubes, this time looking for any food or >> >> environmental allergies or Lyme’s Disease.  Hopefully will find > something >> >> out Monday.  I am also still hanging on to my Feb 28th appointment >> >> with > a >> >> Ruematologist… >> >> Tommy >> > yeah….. they sent my brother to a rheumatologist as well…….. >> > they still haven’t found out why he swells like he does…. and they >> > haven’t found a treatment for it either >> > i hope you have better luck….. and i sure hope it’s not Lyme’s! >> > kate

Response:

oh Tommy research the surgery ’success rate’ for treating sleep apnea within 5 yrs of the initial surgery something like 80 or 90% of the apnea patients are back on CPAP the ‘pillar’ surgery remains to be seen….. we are waiting for reports back and over time we will find out what THAT success rate is if ANY surgeon guarantees 100% recover, RUN , don’t walk away from them!! they are lying to you good luck finding out about the swelling…. glad to hear the cortisone is helping…. but you don’t want to stay on that med long term…….. when do you start ramping down on your dose????? kate "Tommy Ferrell" <tferre…@austin.rr.com> wrote in message

news:Q1eLd.89039$Ta2.31792@fe2.texas.rr.com… – Hide quoted text — Show quoted text -> I hope they can find out something because it is just not normal.  I also > hope they can find a treatment.  When they came back with my blood results > they told me that my Thyroid, Kidney, Liver, Heart and such was functioning > properly and also the my blood sugar levels were great along with my > cholestiral were fine.  So I guess my organs are functioning the way they > should for now.  They only thing that was not with normal range was my > Lymphocytes which were high and they assumed it was from my allergies so > they gave me Flonase and Allergra which have helped. > One odd thing is I have a co-worker that doesn’t even work in the same > building as I and she is now going through the same stages as I did.  She > went to the doc, they took 3 tubes of blood and then advised that she was > fine as well.  They did give her the same meds, Methylpredsinole. > Last week after my steroid treatment started to wear off, my symptoms came > back but included my face this time.  I went back to the doc as I mentioned > in my below response.  This time they gave me a 16 day treatment of > Prednisone which have helped my symptoms a little, just like the > Methylprednisolone but at least my face isn’t hurting…  So now I will wait > to see what they tell me tomorrow. > I also have an appointment tomorrow with the ENT specialist to check on > surgery options for my sleep apnea.  Then on Wednesday I go back to my > Neurologist to get set up with a CPAP and such… > Too many things at once.  Anyways thank you for your thoughts. > Tommy > "Tiger Lily" <m…@privacy.com> wrote in message > news:364pmeF4u2kd7U1@individual.net… > > "Tommy Ferrell" <tferre…@austin.rr.com> wrote in message > > news:SJ%Kd.6872$V51.6468@fe1.texas.rr.com… > >> Well my first 5 tubes of blood came back clean so they put me on > >> Methylprednisolone for 6 days.  The steroid helped for the first 4 days > > then > >> my symptoms started to come back.  So back to the doc I went this past > >> Thursday and they took 3 more tubes, this time looking for any food or > >> environmental allergies or Lyme’s Disease.  Hopefully will find something > >> out Monday.  I am also still hanging on to my Feb 28th appointment with a > >> Ruematologist… > >> Tommy > > yeah….. they sent my brother to a rheumatologist as well…….. > > they still haven’t found out why he swells like he does…. and they > > haven’t found a treatment for it either > > i hope you have better luck….. and i sure hope it’s not Lyme’s! > > kate

Response:

I hope they can find out something because it is just not normal.  I also hope they can find a treatment.  When they came back with my blood results they told me that my Thyroid, Kidney, Liver, Heart and such was functioning properly and also the my blood sugar levels were great along with my cholestiral were fine.  So I guess my organs are functioning the way they should for now.  They only thing that was not with normal range was my Lymphocytes which were high and they assumed it was from my allergies so they gave me Flonase and Allergra which have helped. One odd thing is I have a co-worker that doesn’t even work in the same building as I and she is now going through the same stages as I did.  She went to the doc, they took 3 tubes of blood and then advised that she was fine as well.  They did give her the same meds, Methylpredsinole. Last week after my steroid treatment started to wear off, my symptoms came back but included my face this time.  I went back to the doc as I mentioned in my below response.  This time they gave me a 16 day treatment of Prednisone which have helped my symptoms a little, just like the Methylprednisolone but at least my face isn’t hurting…  So now I will wait to see what they tell me tomorrow. I also have an appointment tomorrow with the ENT specialist to check on surgery options for my sleep apnea.  Then on Wednesday I go back to my Neurologist to get set up with a CPAP and such… Too many things at once.  Anyways thank you for your thoughts. Tommy "Tiger Lily" <m…@privacy.com> wrote in message

news:364pmeF4u2kd7U1@individual.net… – Hide quoted text — Show quoted text -> "Tommy Ferrell" <tferre…@austin.rr.com> wrote in message > news:SJ%Kd.6872$V51.6468@fe1.texas.rr.com… >> Well my first 5 tubes of blood came back clean so they put me on >> Methylprednisolone for 6 days.  The steroid helped for the first 4 days > then >> my symptoms started to come back.  So back to the doc I went this past >> Thursday and they took 3 more tubes, this time looking for any food or >> environmental allergies or Lyme’s Disease.  Hopefully will find something >> out Monday.  I am also still hanging on to my Feb 28th appointment with a >> Ruematologist… >> Tommy > yeah….. they sent my brother to a rheumatologist as well…….. > they still haven’t found out why he swells like he does…. and they > haven’t found a treatment for it either > i hope you have better luck….. and i sure hope it’s not Lyme’s! > kate

Response:

any news yet? "

Response:

"Tommy Ferrell" <tferre…@austin.rr.com> wrote in message

news:RJzFd.4279$_56.3584@fe2.texas.rr.com… > Well I just came from the doctor.  They took 5 things of blood so they could > check multiple things: blood sugar, kidney function, liver function and > mainly for Autoimmune diseases like Lupus.  Will see tomorrow once my > results come in. > Thank you, > Tommy

this doesn’t help you but my brother suffers from the same problem ANY activity at all causes his hands and feet to swell to the point of painfulness for him he has been diagnosed with Hashimoto’s disease (autoimmune attack on the thyroid) kate

Response:

Well my first 5 tubes of blood came back clean so they put me on Methylprednisolone for 6 days.  The steroid helped for the first 4 days then my symptoms started to come back.  So back to the doc I went this past Thursday and they took 3 more tubes, this time looking for any food or environmental allergies or Lyme’s Disease.  Hopefully will find something out Monday.  I am also still hanging on to my Feb 28th appointment with a Ruematologist… Tommy "Tiger Lily" <m…@privacy.com> wrote in message

news:35ihdhF4nvclhU1@individual.net… – Hide quoted text — Show quoted text -> "Tommy Ferrell" <tferre…@austin.rr.com> wrote in message > news:RJzFd.4279$_56.3584@fe2.texas.rr.com… >> Well I just came from the doctor.  They took 5 things of blood so they > could >> check multiple things: blood sugar, kidney function, liver function and >> mainly for Autoimmune diseases like Lupus.  Will see tomorrow once my >> results come in. >> Thank you, >> Tommy > this doesn’t help you but my brother suffers from the same problem ANY > activity at all causes his hands and feet to swell to the point of > painfulness for him > he has been diagnosed with Hashimoto’s disease (autoimmune attack on the > thyroid) > kate

Response:

"Tommy Ferrell" <tferre…@austin.rr.com> wrote in message

news:SJ%Kd.6872$V51.6468@fe1.texas.rr.com… > Well my first 5 tubes of blood came back clean so they put me on > Methylprednisolone for 6 days.  The steroid helped for the first 4 days then > my symptoms started to come back.  So back to the doc I went this past > Thursday and they took 3 more tubes, this time looking for any food or > environmental allergies or Lyme’s Disease.  Hopefully will find something > out Monday.  I am also still hanging on to my Feb 28th appointment with a > Ruematologist… > Tommy

yeah….. they sent my brother to a rheumatologist as well…….. they still haven’t found out why he swells like he does…. and they haven’t found a treatment for it either i hope you have better luck….. and i sure hope it’s not Lyme’s! kate

Response:

On Thu, 13 Jan 2005 19:11:45 GMT, Tommy Ferrell wrote: >Well I just came from the doctor.  They took 5 things of blood so they could >check multiple things: blood sugar, kidney function, liver function and >mainly for Autoimmune diseases like Lupus.  

I’ve only had them draw five tubes at once one time. It was when they did all the autoimmune stuff (turning up complaining of arthritis and being hypothyroid on the last thyroid check). As I remember, it one of the tests took an entire tube, and the others were because the remaining stuff required different preservatives. (Different tube stopper colors, different preservatives. So they don’t grab pink tubes for girl patients and blue tubes for boy patients.) As far as I’m concerned, five is just about as easy as one for the patient, they do all the extra work.

Response:

Well I just came from the doctor.  They took 5 things of blood so they could check multiple things: blood sugar, kidney function, liver function and mainly for Autoimmune diseases like Lupus.  Will see tomorrow once my results come in. Thank you, Tommy "Charlie Perrin" <c.l.perrin@SPAMBOTS_DIEatt.net> wrote in message

news:k3obu0drsdb381kptgogrfm5qtm1kfti1l@4ax.com… – Hide quoted text — Show quoted text -> On Thu, 13 Jan 2005 00:54:49 GMT, Tommy Ferrell wrote: >>I was wondering if anyone here has had problems with their hands or feet >>swelling?  I have sleep apnea and was wondering if the swelling/tingling >>was >>due to lack of oxygen in my blood.  Normally it just happens in the >>morning >>but today it has last all day.  Any comments would be appreciated. > I would think the that edema would go away in an OSA patient because > their body generates diuretic hormone to concentrate the blood, > sucking fluid from elsewhere. > A lot of OSA patients do have high blood pressure, and some of the > meds can cause fluid accumulation. > In any case, I agree with the advice to see a doctor soon.

Response:

I was wondering if anyone here has had problems with their hands or feet swelling?  I have sleep apnea and was wondering if the swelling/tingling was due to lack of oxygen in my blood.  Normally it just happens in the morning but today it has last all day.  Any comments would be appreciated. Thanks, Tommy

Response:

Boy! Before I asked anyone in here about being swollen I would beat my puffy feet to the doctors office. Swelling can be a sign of a serious condition. One of them congestive heart failure. Best Wishes, Laureen

Response:

Thank you Laureen.  I have been doing some searching on line and finding pretty much the same.  Guess it is time I head to the doctor or hospital.  I got 2 little ones and cannot be leaving them this early in their lives. Thanks again, Tommy "Laureen" <TheBenne…@olypen.com> wrote in message

news:1105578641.364978.243060@f14g2000cwb.googlegroups.com… – Hide quoted text — Show quoted text -> Boy! Before I asked anyone in here about being swollen I would beat my > puffy feet to the doctors office. Swelling can be a sign of a serious > condition. One of them congestive heart failure. > Best Wishes, Laureen

Response:

On Thu, 13 Jan 2005 00:54:49 GMT, Tommy Ferrell wrote: >I was wondering if anyone here has had problems with their hands or feet >swelling?  I have sleep apnea and was wondering if the swelling/tingling was >due to lack of oxygen in my blood.  Normally it just happens in the morning >but today it has last all day.  Any comments would be appreciated.

I would think the that edema would go away in an OSA patient because their body generates diuretic hormone to concentrate the blood, sucking fluid from elsewhere. A lot of OSA patients do have high blood pressure, and some of the meds can cause fluid accumulation. In any case, I agree with the advice to see a doctor soon.

Response:

Question:

Thanks for your replies to my post. Saw the neuro and she is sending me for a MRI and something called a checkerboard test and of course more bloodwork. I found her very thorough in her exam and taking my history. She said she is looking at MS as her dx. and that she will be following up. I don’t know how I feel about this, kind of spacy at this time….but I appreciate the good luck wishes. Deb

Response:

Hi Deb, It is nice to see a doctor that is thorough. She will get to the source of your problem, whatever that may be. I wish you good luck with all of this. I will be thinking about you and I hope that you will keep us up to date all what is happening. BJ-Sk. Canada <freed…@netscape.ca> wrote in message

news:sg9dn017a1jn4ufl6aaeksro2c7810clv5@4ax.com… – Hide quoted text — Show quoted text -> Thanks for your replies to my post. Saw the neuro and she is sending > me for a MRI and something called a checkerboard test and of course > more bloodwork. I found her very thorough in her exam and taking my > history. She said she is looking at MS as her dx. and that she will be > following up. I don’t know how I feel about this, kind of spacy at > this time….but I appreciate the good luck wishes. > Deb

Response:

freed…@netscape.ca wrote: > Thanks for your replies to my post. Saw the neuro and she is sending > me for a MRI and something called a checkerboard test and of course > more bloodwork. I found her very thorough in her exam and taking my > history. She said she is looking at MS as her dx. and that she will be > following up. I don’t know how I feel about this, kind of spacy at > this time….but I appreciate the good luck wishes. > Deb

Hi Deb, too weird ! when I look up psoriatic arthritis http://www.arthritis.org/conditions/DiseaseCenter/psoriatic_arthritis… About 95% of those with psoriatic arthritis have swelling in joints outside the spine, and more than 80% of people with psoriatic arthritis have nail lesions. The course of psoriatic arthritis varies, with most doing reasonably well. Symptoms include:     * Silver or grey scaly spots on the scalp, elbows, knees and/or lower end of the spine.     * Pitting of fingernails/toenails     * Pain and swelling in one or more joints     * Swelling of fingers/toes that gives them a "sausage" appearance.[] So are your joints (on scans) inflamed? Do you have a skin condition? How do they explain that one? What do your lab tests say?  see the FAQ for Lupus I suppose it’s possible to have psoriatic arthritis and MS ? I’m just confused at how you can see so many specialists and they all seem to have differing opinions. J

Response:

Hey Deb, My 23 year old neice just got diagnosed with MS.  She has a plaque at the brain stem so they are working diligentally to bring it under control.  Just another autoimmune issue… passed on by genetics? About the MS… remember, just because you have one autoimmune condition, often times there can be others. I never heard of the checkerboard test. I just recently had a closed MRI on my neck, thorasic spine area.  I believe it was with contrast.  I won’t be seeing the Neuro Doc though till Nov. 2 to find out the results if any.  He thinks I may have issues with nerves in my neck, due to a problem I had around a year ago which seemed to send my whole body into spasms. I understand your feelings of spacey.  I think I felt the same sort of way. I was relieved to know they found something, then rather unwanting of what they did find. I mean, after all… people who have diseases are suppose to be born that way, or at least this is what I thought.  And of course, it only happens to the proverbial "other guy." Hang tight and remember the folks who love you are there for you as you are for them. Always, cloud – Hide quoted text — Show quoted text -> Thanks for your replies to my post. Saw the neuro and she is sending > me for a MRI and something called a checkerboard test and of course > more bloodwork. I found her very thorough in her exam and taking my > history. She said she is looking at MS as her dx. and that she will be > following up. I don’t know how I feel about this, kind of spacy at > this time….but I appreciate the good luck wishes. > Deb

Response:

Question:

M wrote: > I have had a rash on my cheeks for about a month. > My family doc is sending me to a Rheumatologist > I have several questions: > I have tried metrogel (Rosacea) and Tetracycline for my face.  Nothing > helped. > Any suggestions?

Well, you may want the rash to be there when you see the rheumatolgist or take photos of it. (before it disappears). List what you tried to make it go away and didn’t work. Now about metrogel – http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/met1601.shtml topical metronidazole Side effects cannot be anticipated. If any develop or change in intensity, inform your doctor as soon as possible. Only your doctor can determine if it is safe for you to continue using topical metronidazole. Side effects may include: Burning or stinging, dryness, itching, metallic taste, nausea, redness, skin irritation, tingling or numbness of hands and feet, worsening of rosacea" Another form of metronidazole (cream) that I use for something else, is way too strong for me and/or I have a sensitivity to it. Both of yours seem to be in families of antibiotics/antinflammatory. If you look in KC’s post here – she mentions what to avoid and how to protect yourself from UV rays. <http://groups.google.com/groups?selm=cvolvv8iei519orjnkmceajnht58h0ut…> I’m wondering if a different cream with cortisone in it might help? Just a thought, because I’m not a doctor. J

Response:

Not as rare as one would think. I was dx’d with lupus, or a lupus-like syndrome 15 yrs ago by the head of rheumotology at Clevenand University Hospitay because of bloodwork & symptoms. How’s your anti-cardiolipin antibody test? Although this fluctuates greately, & not necessarily according to disease activity. My ANA is negative, sed rate is normal, I also have a very high C-reactive protein, am positive for anti-cardiolipin auto-antibody, & positive for RANA. That, given my symptoms of lupus, lead to a diagnosis. I had pancreatitis at 17 (didn’t drink), arthritis from the age of 11, nasal & mout & scalp ulcers, many bouts of pleuracy, malar rash, extreme photosensitivity (NOT a sunburn but a rash that feels like an acid burn), kidney abnormalities, Raynaud’s, livido reticularis, etc. etc. I was lucky, my GP suspected it long before I even knew what lupus was. I heard about a new text available to detect us unlucky people. Candi ———- In article <pQ0ac.7164$lt2.1…@newsread1.news.pas.earthlink.net>, Kristin – Hide quoted text — Show quoted text -<aeroch…@earthlinkremovethispart.net> wrote: >"M" <mke…@prodigy.net> wrote in news:R2L9c.45443$a%1.24825 >@newssvr16.news.prodigy.com: >> Hi, >Hi!! >And welcome >> I recently had some blood work that showed a very high C-reactive >Protein >> and sed rate. >> ANA was negative. >> I have had a rash on my cheeks for about a month. >> My family doc is sending me to a Rheumatologist >> I have several questions: >> Can you have lupus without a positive ANA? >I think so, but it’s rare (I agree with the other replies) >> Is this the correct type of doctor? >Yup!! >> I have tried metrogel (Rosacea) and Tetracycline for my face.  Nothing >> helped. >> Any suggestions? >If you figure this one out, tell all of us!  :) >> Any other suggestions?? >Hang in there, and take things day by day.  Don’t worry too much about >this stuff… >> thanks >You’re welcome >-Kristin

Response:

"M" <mke…@prodigy.net> wrote in news:R2L9c.45443$a%1.24825 @newssvr16.news.prodigy.com: > Hi,

Hi!! And welcome > I recently had some blood work that showed a very high C-reactive Protein > and sed rate. > ANA was negative. > I have had a rash on my cheeks for about a month. > My family doc is sending me to a Rheumatologist > I have several questions: > Can you have lupus without a positive ANA?

I think so, but it’s rare (I agree with the other replies) > Is this the correct type of doctor?

Yup!! > I have tried metrogel (Rosacea) and Tetracycline for my face.  Nothing > helped. > Any suggestions?

If you figure this one out, tell all of us!  :) > Any other suggestions??

Hang in there, and take things day by day.  Don’t worry too much about this stuff… > thanks

You’re welcome -Kristin

Response:

M wrote: > Hi, > I recently had some blood work that showed a very high C-reactive Protein > and sed rate. > ANA was negative. > I have had a rash on my cheeks for about a month. > My family doc is sending me to a Rheumatologist > I have several questions: > Can you have lupus without a positive ANA?

Yes, but I think it’s less common. There’s also drug-induced Lupus (see website below) > Is this the correct type of doctor? > I have tried metrogel (Rosacea) and Tetracycline for my face.  Nothing > helped. > Any suggestions? > Any other suggestions?? > thanks

Hi Maureen, Welcome to alt.support.lupus Have a look around here  http://www.northeastlupus.org.uk/katfaq Make a list of your signs and symptoms. I’ll post some websites about what can cause elevated CRP and possibly some about ESR. Cross off the ones that you know for sure don’t apply. We’ll talk later. J

Response:

In article <R2L9c.45443$a%1.24…@newssvr16.news.prodigy.com>, M <mke…@prodigy.net> wrote >Hi, >I recently had some blood work that showed a very high C-reactive Protein >and sed rate. >ANA was negative. >I have had a rash on my cheeks for about a month. >My family doc is sending me to a Rheumatologist >I have several questions: >Can you have lupus without a positive ANA?

Yes – I think about 5% of lupies have negative ANA >Is this the correct type of doctor?

Yes – Rheumatologists in general are more likely to know about lupus than other types of doctor. >I have tried metrogel (Rosacea) and Tetracycline for my face.  Nothing >helped. >Any suggestions?

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

Response:

Hi, I recently had some blood work that showed a very high C-reactive Protein and sed rate. ANA was negative. I have had a rash on my cheeks for about a month. My family doc is sending me to a Rheumatologist I have several questions: Can you have lupus without a positive ANA? Is this the correct type of doctor? I have tried metrogel (Rosacea) and Tetracycline for my face.  Nothing helped. Any suggestions? Any other suggestions?? thanks

Response:

Question:

LUPUS SLE, PCOS, ARTHRITIS, SICKLE CELL I have a question. I have all the above mentioned ‘ailments’ as I like to call them and am approaching 30, lost 3 babies during pregnancy, one of which nearly took me too, had and recovered from Tuberculosis and have a very low blood sugar which again, nearly took my life, although all elder members of my family suffer diabetes… i have no idea how detrimental or beneficial a combination of them all could be to me and all consultants can tell me is the effects of each individual one. I’m now getting in to a state of panic as I was only told I had a severe case of PCOS 2 weeks ago. Can anyone point me in the right direction?

Response:

PCOS is a prediabetic condition. So you should be treating it as such and eating a diabetic diet and exercising when possible. I know it’s difficult with the disorders you have. If you go on metformin therapy now the chances are that you could stave off the eventual development of type II diabetes. – Hide quoted text — Show quoted text -Mahogany wrote: > LUPUS SLE, PCOS, ARTHRITIS, SICKLE CELL > I have a question. > I have all the above mentioned ‘ailments’ as I like to call them and > am approaching 30, lost 3 babies during pregnancy, one of which nearly > took me too, had and recovered from Tuberculosis and have a very low > blood sugar which again, nearly took my life, although all elder > members of my family suffer diabetes… > i have no idea how detrimental or beneficial a combination of them all > could be to me and all consultants can tell me is the effects of each > individual one. > I’m now getting in to a state of panic as I was only told I had a > severe case of PCOS 2 weeks ago. > Can anyone point me in the right direction?

Response:

- Hide quoted text — Show quoted text -Mahogany wrote: > LUPUS SLE, PCOS, ARTHRITIS, SICKLE CELL > I have a question. > I have all the above mentioned ‘ailments’ as I like to call them and > am approaching 30, lost 3 babies during pregnancy, one of which nearly > took me too, had and recovered from Tuberculosis and have a very low > blood sugar which again, nearly took my life, although all elder > members of my family suffer diabetes… > i have no idea how detrimental or beneficial a combination of them all > could be to me and all consultants can tell me is the effects of each > individual one. > I’m now getting in to a state of panic as I was only told I had a > severe case of PCOS 2 weeks ago. > Can anyone point me in the right direction?

I’ll try to answer, but forgive the language, I’m not used to write in english: Has your thyroid been checked? All your "ailments" are autoimmune diseases, and too often people with autoimmune thyroid diseases get all kind of other diagnoses first. Lupus is a thing on it’s one, if I remember correctly the diagnose is mostly certain, but the other things may very well be thyroid related. I myself started with a diagnose of Ankylosing Spondylitis, which is real, but when my thyroid finally was treated my AS is almost not noticeable. At least it’s worth a checkup. You can read more on alt.support.thyroid. Problems conceiving and with pregnancy are _very_ common (I waited 7 years for my second child and got pregnant after only 6 weeks of thyroid treatment). Blood sugar problems are also common (hypoglycemia?) The same goes for PCOS and cysts, muscle pain and weakness, tiredness, weight gain, sensitive to cold, dizziness, concentration problems, heavy/painful periods and a lot of other stuff. — Line Halvorsen – Norway

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Question:

"BJ" <B…@sk.nojunk.ca> skrev i meddelandet news:100leim215hi754@corp.supernews.com… > Hi Nina, > I am not sure exactly what you mean, but it sounds similar to a problem I > have had for years. The membrane on the outside of my eye bubbles up. It > looks like there is a pocket of fluid under it. The membrane actually > wrinkles up when I roll my eye in the direction of the swelling. I have > always thought it was an allergic reaction to something. Is this the type of > thing you are talking about?

It sure sounds like what I have! Take a look at this picture: http://www.eyeatlas.com/box/328.htm Nina

Response:

Good golly. That is it alright. Didn’t know it had a name. It is nice to know there is someone else who as weird as I am. BJ-Sk. Canada "NW" <ninb…@MJAUyahoo.se> wrote in message

news:iXDOb.78987$dP1.196164@newsc.telia.net… – Hide quoted text — Show quoted text -> "BJ" <B…@sk.nojunk.ca> skrev i meddelandet > news:100leim215hi754@corp.supernews.com… > > Hi Nina, > > I am not sure exactly what you mean, but it sounds similar to a problem I > > have had for years. The membrane on the outside of my eye bubbles up. It > > looks like there is a pocket of fluid under it. The membrane actually > > wrinkles up when I roll my eye in the direction of the swelling. I have > > always thought it was an allergic reaction to something. Is this the type > of > > thing you are talking about? > It sure sounds like what I have! Take a look at this picture: > http://www.eyeatlas.com/box/328.htm > Nina

Response:

Well that makes 3 of us! I too get that occasionally… it’s not a permanent manifestation but there is no mistaking it… great pic! <gag> Hugs from Shelagh "BJ"  wrote in message

: Good golly. That is it alright. Didn’t know it had a name. It is nice to : know there is someone else who as weird as I am. : BJ-Sk. Canada : "NW" wrote in message

: > It sure sounds like what I have! Take a look at this picture: http://www.eyeatlas.com/box/328.htm : > Nina

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Hi Shelagh, Welcome to the group of the "weird." Isn’t it odd that you can have something like that accept it as just an oddity? It looks very charming too. <g> BJ-Sk. Canada "Shelagh" <tidering…@shaw.ca> wrote in message

news:D8GOb.167298$ts4.77714@pd7tw3no… – Hide quoted text — Show quoted text -> Well that makes 3 of us! > I too get that occasionally… it’s not a permanent manifestation > but there is no mistaking it… great pic! <gag> > Hugs from Shelagh > "BJ"  wrote in message > : Good golly. That is it alright. Didn’t know it had a name. It > is nice to > : know there is someone else who as weird as I am. > : BJ-Sk. Canada > : "NW" wrote in message > : > It sure sounds like what I have! Take a look at this picture: > http://www.eyeatlas.com/box/328.htm > : > Nina

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Anyone had that, especially nodular episcleritis? It can be part of several autoimmune diseases (AS, Crohn’s, lupus, psoriatic arthritis, RA etc), as well as appear in healthy people, so it’s not clear why I got it. It scared the crap out of me though! I was removing my eye makeup the other day when I noticed the outer half of my right eye was red and had a jelly-like lump. I first thought I had wiped off the outer layer of my eye with the makeup remover, or that I maybe put in 2 contact lenses in the same eye in the morning. Good thing is it’s pretty benign, especially compared to scleritis and iritis/uveitis. It isn’t very painful either, just some minor pain. I don’t need any treatment, as it has improved already. Glad it wasn’t iritis. I was afraid it ‘d be that, since I have AS and the HLA-B27 marker. Nina

Response:

Hi Nina, I am not sure exactly what you mean, but it sounds similar to a problem I have had for years. The membrane on the outside of my eye bubbles up. It looks like there is a pocket of fluid under it. The membrane actually wrinkles up when I roll my eye in the direction of the swelling. I have always thought it was an allergic reaction to something. Is this the type of thing you are talking about? BJ-Sk. Canada "NW" <ninb…@MJAUyahoo.se> wrote in message

news:aovOb.78855$dP1.195502@newsc.telia.net… – Hide quoted text — Show quoted text -> Anyone had that, especially nodular episcleritis? It can be part of several > autoimmune diseases (AS, Crohn’s, lupus, psoriatic arthritis, RA etc), as > well as appear in healthy people, so it’s not clear why I got it. It scared > the crap out of me though! I was removing my eye makeup the other day when I > noticed the outer half of my right eye was red and had a jelly-like lump. I > first thought I had wiped off the outer layer of my eye with the makeup > remover, or that I maybe put in 2 contact lenses in the same eye in the > morning. > Good thing is it’s pretty benign, especially compared to scleritis and > iritis/uveitis. It isn’t very painful either, just some minor pain. I don’t > need any treatment, as it has improved already. Glad it wasn’t iritis. I was > afraid it ‘d be that, since I have AS and the HLA-B27 marker. > Nina

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Question:

NSAIDs don’t stop the damage.  In the recent issue of Arthritis Today, a RD’s wife was trying to save her hip.  She took glucosamine and vit c.  She did have to have the hip replaced.  Just passing the info along Nicole — Someone you know has lupus.  Help find the cure.  www.lupus.org "Stephanie Townsend" <ler…@nospam.hotmail.com> wrote in message

news:6c07a$3fff76ab$42868151$8953@msgid.meganewsservers.com… – Hide quoted text — Show quoted text -> I was prescribed mobic awhile ago — but I did not see results. However, > none of the drugs such as Vioxx, Celebrex or Bextra have helped with my > pain. I do know that the drug came very highly recommended to me. I hope it > works for you! It did not upset my stomach though — so maybe it will be > good for you. Keep us updated. > Stephanie > <LR…@webtv.net> wrote in message > news:7954-3FFEA512-29@storefull-2273.public.lawson.webtv.net… > > i was just rx’d mobic for osteo athritis in my hip.  i can’t take > > celebrex or bextra and won’t take vioxx (two people i know i very > > strange behavior – even for them – while on vioxx so i’ll pass) so the > > rheumie says this is the next best.  he started me out on 7.5 mg to see > > if i can tolerate it without stomach problems (EVERYthing upsets my > > stomach!).  does this stuff work?  he said that if we don’t stop the > > deterioration in this hip i’m facing a hip replacement in 5 years!  any > > comments on mobic?  thanks in advance. > > madison in nh

Response:

hi stephanie, i took one mobic thursday night and one on friday afternoon and woke up this morning with my face very swollen.  i guess i’ll pass on the mobic. i’ll call the doctor monday for something new.  thanks for the info, though. madison

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LR…@webtv.net wrote: > hi stephanie, > i took one mobic thursday night and one on friday afternoon and woke up > this morning with my face very swollen.  i guess i’ll pass on the mobic. > i’ll call the doctor monday for something new.  thanks for the info, > though. > madison

Under side effects it (Mobid) did have "edema" mentioned. this one does not mention edema http://www.rxlist.com/cgi/generic3/sulindac_ad.htm However, it mentions rash and itching. (which I did not get) I remember now, I was getting headaches, but everyone’s different.. Hugs J

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With one of the side effects being sensitive to the sun, I wouldn’t imagine giving it to someone with lupus as you already have potential to have that problem with out the medication…JMO as I don’t have lupus and I am not a doctor….Just me rambling Hugs Cindy <LR…@webtv.net> wrote in message

news:7954-3FFEA512-29@storefull-2273.public.lawson.webtv.net… – Hide quoted text — Show quoted text -> i was just rx’d mobic for osteo athritis in my hip.  i can’t take > celebrex or bextra and won’t take vioxx (two people i know i very > strange behavior – even for them – while on vioxx so i’ll pass) so the > rheumie says this is the next best.  he started me out on 7.5 mg to see > if i can tolerate it without stomach problems (EVERYthing upsets my > stomach!).  does this stuff work?  he said that if we don’t stop the > deterioration in this hip i’m facing a hip replacement in 5 years!  any > comments on mobic?  thanks in advance. > madison in nh

Response:

JD…@webtv.net wrote: > HI Madison! > Here’s some info on Mobic.  I know J took this & stopped.  I believe it > was affecting her eyes?  She will likely respond & let you know. > I hope it works for you though & I hope the insurance covers it.  Good > luck!  Maggie > http://www.drugstore.com/pharmacy/prices/drugprice.asp?ndc=0059700290…

Do you keep notes? <g> Great memory maggie ! I’ve never tried celebrex or bextra but couldn’t tolerate Vioxx. I have osteoarthritis throughout the body but shoulder joints are the worst. So Mobic at 7.5 or maybe a bit more, takes the edge off but as soon as I try to increase the dose, reflux (GERD) gets worse and I see that mentioned on your website above. The ones I have are http://www.rxlist.com/cgi/generic3/mobic_ad.htm and http://www.rxlist.com/cgi/generic3/sulindac_ad.htm Sulindac I had high hopes for that one but it too at maximum daily dose barely took the edge off. I hope that madison has better luck than me. the eyes..well it happened once soon after stopping the Sulindac so I concluded that it wasn’t the meds and the eye doctor says it’s probably not the meds (but he never looked them up). he thinks it’s aging and/or combo of my wrong multi-vitamin. Strangely the same thing has not happened since I stopped the meds, so I don’t know. I will pop one or the other or both when I get desperate for any type of relief. There might have been another problem with Sulindac, but I don’t have my notes handy, and I don’t want to put ideas into madison’s head.  Jinx her.  Will watch with interest and hope she gets some relief Hugs Maggie J

Response:

I was prescribed mobic awhile ago — but I did not see results. However, none of the drugs such as Vioxx, Celebrex or Bextra have helped with my pain. I do know that the drug came very highly recommended to me. I hope it works for you! It did not upset my stomach though — so maybe it will be good for you. Keep us updated. Stephanie <LR…@webtv.net> wrote in message

news:7954-3FFEA512-29@storefull-2273.public.lawson.webtv.net… – Hide quoted text — Show quoted text -> i was just rx’d mobic for osteo athritis in my hip.  i can’t take > celebrex or bextra and won’t take vioxx (two people i know i very > strange behavior – even for them – while on vioxx so i’ll pass) so the > rheumie says this is the next best.  he started me out on 7.5 mg to see > if i can tolerate it without stomach problems (EVERYthing upsets my > stomach!).  does this stuff work?  he said that if we don’t stop the > deterioration in this hip i’m facing a hip replacement in 5 years!  any > comments on mobic?  thanks in advance. > madison in nh

Response:

i was just rx’d mobic for osteo athritis in my hip.  i can’t take celebrex or bextra and won’t take vioxx (two people i know i very strange behavior – even for them – while on vioxx so i’ll pass) so the rheumie says this is the next best.  he started me out on 7.5 mg to see if i can tolerate it without stomach problems (EVERYthing upsets my stomach!).  does this stuff work?  he said that if we don’t stop the deterioration in this hip i’m facing a hip replacement in 5 years!  any comments on mobic?  thanks in advance. madison in nh

Response:

My husband and I have taken mobic. It does pretty good once you have it in your system for a while. Takes a few days. It has never bothered my stomach. But just to be safe I would take it with food. My problem is my insurance will not pay for it. I have to get samples from the kind doctor. Insurance companies are a pain! Paulette Ethyl Mermaid <LR…@webtv.net> wrote in message

news:7954-3FFEA512-29@storefull-2273.public.lawson.webtv.net… – Hide quoted text — Show quoted text -> i was just rx’d mobic for osteo athritis in my hip.  i can’t take > celebrex or bextra and won’t take vioxx (two people i know i very > strange behavior – even for them – while on vioxx so i’ll pass) so the > rheumie says this is the next best.  he started me out on 7.5 mg to see > if i can tolerate it without stomach problems (EVERYthing upsets my > stomach!).  does this stuff work?  he said that if we don’t stop the > deterioration in this hip i’m facing a hip replacement in 5 years!  any > comments on mobic?  thanks in advance. > madison in nh

Response:

thanks for the reply.  i have three weeks’ worth of samples but just mailed in my rx.  don’t know if my insurance will give me a hard time or not.  i was told at least three weeks before i notice any improvement and may not on this dose.  time will tell…..madison

Response:

HI Madison! Here’s some info on Mobic.  I know J took this & stopped.  I believe it was affecting her eyes?  She will likely respond & let you know. I hope it works for you though & I hope the insurance covers it.  Good luck!  Maggie http://www.drugstore.com/pharmacy/prices/drugprice.asp?ndc=0059700290…

Response:

Question:

My RD doesn’t know. She’s ruled out RA, AS, & Lupus. My labs were normal except for a slightly elevated ESR (49). There is NO joint damage at all and barely any inflammation to be felt in my joints. She’s doing a bone scan next to see where the inflammation is and go from there. She wants to see my previous RD’s thoughts because there is no way by any possible stretch of the imagination for me to have RA. She’s also testing my ESR & CRP again, as well as adding the HLA-B27 gene test. I am getting a referral to a neurologist for my migraines. Maybe that will shed light on something. -AshleyC.

Response:

A sedrate of 49 is definitely elevated – maybe not as high as some around here, but defintiel elevated. Usually the upper limit of "normal" is 20.  Of course, mine’s been in the teens with obviously swollen joints for a couple of years now, so the numbers alone don’t mean much.  It’s good that she’s doing further testing to try and decide what’s going on. — Nann remove the Gator cheer to email me Simply the thing I am shall make me live — William Shakespeare

Response:

The highest my sed rate ever was is 25. 49 is definitely high for me. -AshleyC. "Nann Bell" <hanbellGOGAT…@earthlink.net> wrote in message

news:0001HW.BBDECECA0030CA6F1286BE20@news.east.earthlink.net… – Hide quoted text — Show quoted text -> A sedrate of 49 is definitely elevated – maybe not as high as some around > here, but defintiel elevated. Usually the upper limit of "normal" is 20. Of > course, mine’s been in the teens with obviously swollen joints for a couple > of years now, so the numbers alone don’t mean much.  It’s good that she’s > doing further testing to try and decide what’s going on. > — > Nann > remove the Gator cheer to email me > Simply the thing I am shall make me live — William Shakespeare

Response:

On Mon, 17 Nov 2003 15:54:18 -0800, "Ashley Canterbury" <gimpygr…@hotmail.com> wrote: >My RD doesn’t know. She’s ruled out RA, AS, & Lupus. My labs were normal >except for a slightly elevated ESR (49).

Not sure I’d call that "slightly" elevated.  I mean, it’s not huge, but it’s not negligible either. >There is NO joint damage at all and >barely any inflammation to be felt in my joints.

Lupus arthritis rarely causes damage to joints and often shows no noticeable inflammation – sometimes mild swelling or redness.  Often just pain though.  Still, I’d rather you *not* have Lupus. >next to see where the inflammation is and go from there. She wants to see my >previous RD’s thoughts because there is no way by any possible stretch of >the imagination for me to have RA. She’s also testing my ESR & CRP again, as >well as adding the HLA-B27 gene test.

sorry – i’m a bit out of touch – was an ANA titre done?  any of the other antibody tests such as anti-Sm, anti-Ro, anti-La?  Sjogren’s can cause joint pain like lupus with no obvious inflammation or the like and can have low or normal ANA titres.  Of course, there would *probably* (but not necessarily if it’s early in the game) be other Sjogren’s symptoms such as dry mouth, dry eyes, bouts of iritis… >I am getting a referral to a neurologist for my migraines. Maybe that will >shed light on something.

Best wishes.  I’ve dealt with those for… well, since I was 19.  I’m not 19 anymore.   (oh, okay – 20 years) kcat – who is bored bored bored…

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{{{{{{{Ashley}}}}}}} DeeTee ________________________________ DeeTee and Bob Taggart http://home.earthlink.net/~bdtaggart ________________________________ "Ashley Canterbury" <gimpygr…@hotmail.com> wrote in message

news:bpbn38$1l1ah9$1@ID-192837.news.uni-berlin.de… – Hide quoted text — Show quoted text -> My RD doesn’t know. She’s ruled out RA, AS, & Lupus. My labs were normal > except for a slightly elevated ESR (49). There is NO joint damage at all and > barely any inflammation to be felt in my joints. She’s doing a bone scan > next to see where the inflammation is and go from there. She wants to see my > previous RD’s thoughts because there is no way by any possible stretch of > the imagination for me to have RA. She’s also testing my ESR & CRP again, as > well as adding the HLA-B27 gene test. > I am getting a referral to a neurologist for my migraines. Maybe that will > shed light on something. > -AshleyC.

Response:

ALL of the lupus tests were negative. -AshleyC. "kcat" <kca…@sbcglobal.net> wrote in message

news:rjpirv4bbfigagl2neivh9oue4sqqp0v85@4ax.com… – Hide quoted text — Show quoted text -> On Mon, 17 Nov 2003 15:54:18 -0800, "Ashley Canterbury" > <gimpygr…@hotmail.com> wrote: > >My RD doesn’t know. She’s ruled out RA, AS, & Lupus. My labs were normal > >except for a slightly elevated ESR (49). > Not sure I’d call that "slightly" elevated.  I mean, it’s not huge, > but it’s not negligible either. > >There is NO joint damage at all and > >barely any inflammation to be felt in my joints. > Lupus arthritis rarely causes damage to joints and often shows no > noticeable inflammation – sometimes mild swelling or redness.  Often > just pain though.  Still, I’d rather you *not* have Lupus. > >next to see where the inflammation is and go from there. She wants to see my > >previous RD’s thoughts because there is no way by any possible stretch of > >the imagination for me to have RA. She’s also testing my ESR & CRP again, as > >well as adding the HLA-B27 gene test. > sorry – i’m a bit out of touch – was an ANA titre done?  any of the > other antibody tests such as anti-Sm, anti-Ro, anti-La?  Sjogren’s can > cause joint pain like lupus with no obvious inflammation or the like > and can have low or normal ANA titres.  Of course, there would > *probably* (but not necessarily if it’s early in the game) be other > Sjogren’s symptoms such as dry mouth, dry eyes, bouts of iritis… > >I am getting a referral to a neurologist for my migraines. Maybe that will > >shed light on something. > Best wishes.  I’ve dealt with those for… well, since I was 19.  I’m > not 19 anymore.   (oh, okay – 20 years) > kcat – who is bored bored bored…

Response:

Well, crud! I hate feeling lousy and not knowing why. At least if it has a name you can educate yourself about it. Hang in there, little one, we’ll keep hoping for a swift resolution to this mess. Kelly C.;o)

Response:

Sorry you didn’t get any wiser yesterday Ashley, but it’s good that your RD keeps on investigating. Bone scan is probably a good idea. Don’t know how it is with RA and SLE, but AS changes sometimes take several years to develop. Also, early AS doesn’t always show up on plain X-rays. As for the elevated sed rate – didn’t you have some infection recently? That might account for the elevation. Nina "Ashley Canterbury" <gimpygr…@hotmail.com> skrev i meddelandet news:bpbn38$1l1ah9$1@ID-192837.news.uni-berlin.de… – Hide quoted text — Show quoted text -> My RD doesn’t know. She’s ruled out RA, AS, & Lupus. My labs were normal > except for a slightly elevated ESR (49). There is NO joint damage at all and > barely any inflammation to be felt in my joints. She’s doing a bone scan > next to see where the inflammation is and go from there. She wants to see my > previous RD’s thoughts because there is no way by any possible stretch of > the imagination for me to have RA. She’s also testing my ESR & CRP again, as > well as adding the HLA-B27 gene test. > I am getting a referral to a neurologist for my migraines. Maybe that will > shed light on something. > -AshleyC.

Response:

Hi Ashley, This soudns good, though, that this RD seems to be doing a really thorough job. Not having a diagnosis is definitely frustrating, I know, but now it sounds like you’re getting closer to one. I was complaining to Elena’s Humira study nurse this morning that Humira isn’t the complete magic wand that I’d been hoping it would be. He said he’d been noticing that with other patients as well, but that there are other very promising drugs coming along that he thinks are closer to the magic wand category. That’s all the info I have, but we’re going to talk more at her next appt. in December. I will pass any and all info, including rumors, along to ASA. Hang in there, honey, a diagnosis and a treatment are just around the corner. Evelyn (mother of Elena, who has JRA         and Pancha, who has FMS) – Hide quoted text — Show quoted text -"Ashley Canterbury" <gimpygr…@hotmail.com> wrote in message <news:bpbn38$1l1ah9$1@ID-192837.news.uni-berlin.de>… > My RD doesn’t know. She’s ruled out RA, AS, & Lupus. My labs were normal > except for a slightly elevated ESR (49). There is NO joint damage at all and > barely any inflammation to be felt in my joints. She’s doing a bone scan > next to see where the inflammation is and go from there. She wants to see my > previous RD’s thoughts because there is no way by any possible stretch of > the imagination for me to have RA. She’s also testing my ESR & CRP again, as > well as adding the HLA-B27 gene test. > I am getting a referral to a neurologist for my migraines. Maybe that will > shed light on something. > -AshleyC.

Response:

Question:

In <news:549f2a40.0311101615.20c8cdb4@posting.google.com>, edward hill said: > hi pauline. > you might be interested in the > Inflammatory responses and some good news > thread.

You want an inflammatory response, Ed? #$(%  you… and the !&%*ing horse you *$^&ing rode in on.   <snickers behind hands> ((U))   M

Response:

ed wrote…

| hi pauline. | | you might be interested in the | | Inflammatory responses and some good news | thread. Thanks ed. Hopefully we will all lose our MS MillStones very soon. Take care, Pauline

Response:

- Hide quoted text — Show quoted text -"Michael" <muirh…@island.net> wrote in message <news:bopf2g02022@enews2.newsguy.com>… > In <news:549f2a40.0311101615.20c8cdb4@posting.google.com>, > edward hill said: > > hi pauline. > > you might be interested in the > > Inflammatory responses and some good news > > thread. > You want an inflammatory response, Ed? > #$(%  you… and the !&%*ing horse you *$^&ing rode in on.   > <snickers behind hands> > ((U))

ahhhhhh…a wise guy huh?(in my best three stooges voice) lookin’ fer and inflammatory war i see? arf arf ed – Hide quoted text — Show quoted text ->   M

Response:

Autoantibodies Precede Disease in Lupus Patients A new study funded largely by the National Institute of Arthritis and Musculoskeletal and Skin Diseases in the US reveals that people diagnosed with lupus, an autoimmune disease in which the body attacks its own tissues, have autoantibodies in their blood years before the symptoms of lupus appear. The early detection of autoantibodies could help in recognising those who will develop the disease and allow doctors to monitor them before they might otherwise be noticed. John Harley, M.D., Ph.D., and his colleagues, tested blood from 130 U.S. armed forces servicemen and women, without knowing their identities, who were once healthy but later developed lupus. Using many years of previously collected samples from the Department of Defense Serum Repository, the researchers compared samples from the lupus patients to samples from those who never developed lupus. When testing early samples from both groups, they found that those with lupus had the autoantibodies in their blood for months to years before symptoms appeared. "We don’t know whether the virtual halt in the accumulation of new autoantibodies is a result of therapy now typically used or whether the relative stability in the autoantibodies found after diagnosis is a feature of the natural history of lupus," said Dr. Harley. Lupus can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels and brain. People who have lupus may have many different symptoms, but some of the most common ones include extreme fatigue, painful or swollen joints (arthritis), unexplained fever, skin rashes and kidney problems. Many more women than men have lupus. Gregory Dennis, M.D., a coauthor of the study, said, "Lupus and other autoimmune diseases often go untreated for years and are diagnosed only after damage to the body tissues has occurred. Findings such as these, which will help us identify and monitor people who may develop these diseases, are extremely valuable." http://www.youreable.com/TwoShare/getPage/01News/01Current/November20…

Response:

hi pauline. you might be interested in the Inflammatory responses and some good news thread. regards ed – Hide quoted text — Show quoted text -"Pauline" <paul…@dial.pipex.co.uk> wrote in message <news:3fada6dd$0$256$cc9e4d1f@news.dial.pipex.com>… > Autoantibodies Precede Disease in Lupus Patients > A new study funded largely by the National Institute of Arthritis > and Musculoskeletal and Skin Diseases in the US reveals that > people diagnosed with lupus, an autoimmune disease in which > the body attacks its own tissues, have autoantibodies in their > blood years before the symptoms of lupus appear. > The early detection of autoantibodies could help in recognising > those who will develop the disease and allow doctors to monitor > them before they might otherwise be noticed. > John Harley, M.D., Ph.D., and his colleagues, tested blood from > 130 U.S. armed forces servicemen and women, without knowing > their identities, who were once healthy but later developed lupus. > Using many years of previously collected samples from the Department > of Defense Serum Repository, the researchers compared samples > from the lupus patients to samples from those who never developed > lupus. When testing early samples from both groups, they found > that those with lupus had the autoantibodies in their blood for > months to years before symptoms appeared. > "We don’t know whether the virtual halt in the accumulation > of new autoantibodies is a result of therapy now typically used or > whether the relative stability in the autoantibodies found after > diagnosis is a feature of the natural history of lupus," said Dr. Harley. > Lupus can affect many parts of the body, including the joints, skin, > kidneys, heart, lungs, blood vessels and brain. People who have lupus > may have many different symptoms, but some of the most common > ones include extreme fatigue, painful or swollen joints (arthritis), > unexplained fever, skin rashes and kidney problems. Many more > women than men have lupus. > Gregory Dennis, M.D., a coauthor of the study, said, "Lupus and > other autoimmune diseases often go untreated for years and are > diagnosed only after damage to the body tissues has occurred. > Findings such as these, which will help us identify and monitor > people who may develop these diseases, are extremely valuable." > http://www.youreable.com/TwoShare/getPage/01News/01Current/November20…

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Question:

Ciao, Marina. Il vostro traduttore automatico ha scritto l’inglese incomprensibile. Non possiamo capirlo ma vorremmo aiutarli. Per favore, scrivanoi ancora il vostro messaggio in italiano. Proveremo a tradurrelo. O, forse potreste trovare un amico per aiutarli a tradurre la vostra domanda in inglese buono. Grazie per il vostro messaggio! (Hello, Marina. Your automatic translator wrote incomprehensible English. We cannot understand it but we would like to help you. Please write your message again in Italian. We will try to translate it. Also, perhaps you could find a friend to help you translate your question into good English. Thank you for your message!) – Hide quoted text — Show quoted text -"marina" <mar…@tin.it> wrote in message <news:k14pb.80743$e5.2996913@news1.tin.it>… > Salutes to all > Hour find again me with the usual problem that is a treenail dx painful and > always inflamed this is from rather a lot of years > Lately however the pain is unbearable succeed to walk only with the shoes of > gymnastics > I look for to avoid the anti-inflammatories to not have other problems if I > go from the orthopedic doesn’t resolve nothing when they see ([les]) say > that this is the cause a form of arthritis > My articulation among the shinbone and the milk-vetch has the rima a lot of > reduced problem of cartilage > The trouble that lately I am fallen and I have broken a piece of meniscus on > the [sx] looms > In short if I need an orthopedic am in trouble doesn’t understand because > too having orthopedic problems doesn’t operate and they unload all on the > problem of the [les] > What think? > Ciao marinates

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Salutes to all Hour find again me with the usual problem that is a treenail dx painful and always inflamed this is from rather a lot of years Lately however the pain is unbearable succeed to walk only with the shoes of gymnastics I look for to avoid the anti-inflammatories to not have other problems if I go from the orthopedic doesn’t resolve nothing when they see ([les]) say that this is the cause a form of arthritis My articulation among the shinbone and the milk-vetch has the rima a lot of reduced problem of cartilage The trouble that lately I am fallen and I have broken a piece of meniscus on the [sx] looms In short if I need an orthopedic am in trouble doesn’t understand because too having orthopedic problems doesn’t operate and they unload all on the problem of the [les] What think? Ciao marinates

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- Hide quoted text — Show quoted text -Pell Nilly wrote: > "marina" <mar…@tin.it> wrote in message <news:k14pb.80743$e5.2996913@news1.tin.it>… > > Salutes to all > > Hour find again me with the usual problem that is a treenail dx painful and > > always inflamed this is from rather a lot of years > > Lately however the pain is unbearable succeed to walk only with the shoes of > > gymnastics > > I look for to avoid the anti-inflammatories to not have other problems if I > > go from the orthopedic doesn’t resolve nothing when they see ([les]) say > > that this is the cause a form of arthritis > > My articulation among the shinbone and the milk-vetch has the rima a lot of > > reduced problem of cartilage > > The trouble that lately I am fallen and I have broken a piece of meniscus on > > the [sx] looms > > In short if I need an orthopedic am in trouble doesn’t understand because > > too having orthopedic problems doesn’t operate and they unload all on the > > problem of the [les]

I’m getting shinbone miniscus Orthopedic won’t do anything for her. They’re blaming it on LES (Lupus)..form of arthritis.. and expecting/wanting her to treat it with meds. She thinks surgery would be helpful. http://www.aaos.org/wordhtml/bulletin/jun02/acdnw20.htm Without treatment, a fragment of the meniscus may loosen and drift into the joint, causing it to slip, pop or lock

Question:

hey all I just thought I would pop in and say that tomorrow is going to be a very busy day for me healthwise. First I go to find out about the pain in my breast..mammogram and ultrasound. Then I go to my rd for remecade first dose tomorrow. I am so scared and nervous and wondering if I should do this, but I am in a situation that if I do not I could wind up crippled in my hands and feet within 10 years. My ra is very active right now and my rd thinks that this would be great for me. I have heard that remecade can cause Lupus to flare or if you do not have lupus it will give you the symptoms of Lupus.. I did a search online about the drug and I have found several scary sites that are ran by attorneys that are against it. Oh man does that put a dent in my confidence. I guess I will take it with a hope and a prayer leaving it up to the big guy upstairs to lead and comfort me. I hope this darn wormy goes somewhere else before I put him on my hook and go fishing!! Love you guys see ya soon, RhondaM

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Hi Rhonda! I hope all goes well for you tomorrow.  Try to keep in mind that you could probably find a few scarey sites on just about every med on the planet & most would be ran by greedy lawyers.   Some of this stuff we have to take *is* scarey & they do have consequences sometimes, I know, but we have to try & weigh the good & bad & I see that’s what you’ve done.   Your doc knows your health issues too & surely he wouldn’t put you in harms way.  Nonetheless, I can sure understand your anxiety. I’ll keep you in my thoughts tomorrow with your Mammogram & Remecade treatment.  How is work going, BTW?  Are you starting to get used to it all? Hugs4u, Maggie

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Ditto!! Hugs, Sherry "Marg Watson" <JD…@webtv.net> wrote in message

news:10911-3F6E6E3B-96@storefull-2154.public.lawson.webtv.net… – Hide quoted text — Show quoted text -> Hi Rhonda! > I hope all goes well for you tomorrow.  Try to keep in mind that you > could probably find a few scarey sites on just about every med on the > planet & most would be ran by greedy lawyers. > Some of this stuff we have to take *is* scarey & they do have > consequences sometimes, I know, but we have to try & weigh the good & > bad & I see that’s what you’ve done. > Your doc knows your health issues too & surely he wouldn’t put you in > harms way.  Nonetheless, I can sure understand your anxiety. > I’ll keep you in my thoughts tomorrow with your Mammogram & Remecade > treatment.  How is work going, BTW?  Are you starting to get used to it > all? > Hugs4u, > Maggie

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Hi Rhonda, I’ve been on Remicade, and am currently on Enbrel (which is in the same category as Remicade), not for lupus, but for ankylosing spondylitis and psoritatic arthritis. As far as I know, people with no former diagnosis of lupus getting lupuslike disease is relatively rare, and symptoms disappear after stopping treatment. There are also people who develop ANA and anti-ds-DNA-antibodies while on Remicade or Enbrel, but without getting any lupus symtoms. Some people with "real" lupus have been recieving Remicade or Enbrel for their joint symtoms without the lupus getting worse. Don’t know much about lupus, but I think your RD is monitoring you closely and wouldn’t put you on Remicade if it’d make your lupus worse. Many people with RA, AS, PA etc on alt.support.arthritis are on Remicade (and Enbrel) with great results and no problems. You might wanna peek in there. Also, talk to your doctor if you’re worried. Good luck, Nina "RhondaM" <nos…@nospam.net> skrev i meddelandet news:aisbb.1418$zh3.236@newssvr22.news.prodigy.com… – Hide quoted text — Show quoted text -> hey all I just thought I would pop in and say that tomorrow is going to be a > very busy day for me healthwise. First I go to find out about the pain in my > breast..mammogram and ultrasound. Then I go to my rd for remecade first dose > tomorrow. I am so scared and nervous and wondering if I should do this, but > I am in a situation that if I do not I could wind up crippled in my hands > and feet within 10 years. My ra is very active right now and my rd thinks > that this would be great for me. I have heard that remecade can cause Lupus > to flare or if you do not have lupus it will give you the symptoms of > Lupus.. I did a search online about the drug and I have found several scary > sites that are ran by attorneys that are against it. Oh man does that put a > dent in my confidence. I guess I will take it with a hope and a prayer > leaving it up to the big guy upstairs to lead and comfort me. > I hope this darn wormy goes somewhere else before I put him on my hook and > go fishing!! > Love you guys see ya soon, > RhondaM

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me too. Hugs J – Hide quoted text — Show quoted text -Sherry wrote: > Ditto!! > "Marg Watson" wrote in message > ><snip> > > I’ll keep you in my thoughts tomorrow with your Mammogram & Remecade > treatment.

Response:

Good luck Rhonda, Did you get to go to the game on Saturday?  That was great wasn’t it. I hope that all goes well with you today. Hugs Cindy "RhondaM" <nos…@nospam.net> wrote in message

news:aisbb.1418$zh3.236@newssvr22.news.prodigy.com… – Hide quoted text — Show quoted text -> hey all I just thought I would pop in and say that tomorrow is going to be a > very busy day for me healthwise. First I go to find out about the pain in my > breast..mammogram and ultrasound. Then I go to my rd for remecade first dose > tomorrow. I am so scared and nervous and wondering if I should do this, but > I am in a situation that if I do not I could wind up crippled in my hands > and feet within 10 years. My ra is very active right now and my rd thinks > that this would be great for me. I have heard that remecade can cause Lupus > to flare or if you do not have lupus it will give you the symptoms of > Lupus.. I did a search online about the drug and I have found several scary > sites that are ran by attorneys that are against it. Oh man does that put a > dent in my confidence. I guess I will take it with a hope and a prayer > leaving it up to the big guy upstairs to lead and comfort me. > I hope this darn wormy goes somewhere else before I put him on my hook and > go fishing!! > Love you guys see ya soon, > RhondaM

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NO didnt get to go but I watched on tv.. I went to the OU fresno st game.. My rd says that My RA is active and I have curves in my fingers and erosions on my joints in my hands.. I guess narrowing too. I did my first dose of remacade and I am ok just tired. I Am wondering about a port instead of ivs they had a time trying to stick me.. everyone has a time trying to stick me…no veins here. I Am going to be ok fears are at rest and I am going to deal with this stuff.. hugs too all and I WILL SEE YOU SOON BYE BYE "Cindy" <cmath…@cox.net> wrote in message

news:PBCbb.2737$KJ4.869@news1.central.cox.net… – Hide quoted text — Show quoted text -> Good luck Rhonda, > Did you get to go to the game on Saturday?  That was great wasn’t it. > I hope that all goes well with you today. > Hugs Cindy > "RhondaM" <nos…@nospam.net> wrote in message > news:aisbb.1418$zh3.236@newssvr22.news.prodigy.com… > > hey all I just thought I would pop in and say that tomorrow is going to be > a > > very busy day for me healthwise. First I go to find out about the pain in > my > > breast..mammogram and ultrasound. Then I go to my rd for remecade first > dose > > tomorrow. I am so scared and nervous and wondering if I should do this, > but > > I am in a situation that if I do not I could wind up crippled in my hands > > and feet within 10 years. My ra is very active right now and my rd thinks > > that this would be great for me. I have heard that remecade can cause > Lupus > > to flare or if you do not have lupus it will give you the symptoms of > > Lupus.. I did a search online about the drug and I have found several > scary > > sites that are ran by attorneys that are against it. Oh man does that put > a > > dent in my confidence. I guess I will take it with a hope and a prayer > > leaving it up to the big guy upstairs to lead and comfort me. > > I hope this darn wormy goes somewhere else before I put him on my hook and > > go fishing!! > > Love you guys see ya soon, > > RhondaM

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