Lupus FAQ

Question:

Does hot weather affect rashes and such with Lupus ?

Response:

It sure does with me! It makes my rashes more visible and aggravates my skin and generally makes me feel LOUSY. I feel so much better and accomplish so much more when it is cool outside, and in. — hugs……from Shelagh "the more things change, the more they stay the same" "Kimby" <Kimd…@adelphia.net> wrote in message

news:WD9Ha.2333$Hw.2130649@news2.news.adelphia.net… – Hide quoted text — Show quoted text -> Does hot weather affect rashes and such with Lupus ?

Response:

On Mon, 16 Jun 2003 02:07:50 GMT, "Kimby" <Kimd…@adelphia.net> wrote: >Does hot weather affect rashes and such with Lupus ?

oh yeah! Infra-red light (heat, IOW) can cause problems for a lot of us.  I turn an interesting shade of Washington Red Delicious when I get too warm whether I’m inside or outside.  Heating pads can relieve muscle pain – but tend to cause much itching and little bubbly rashes at points of contact.  

Response:

YES! Especially if combined with sun exposure of even limited duration.  I’m in deep brain fog others will say more. Jackie "Kimby" <Kimd…@adelphia.net> wrote in message

news:WD9Ha.2333$Hw.2130649@news2.news.adelphia.net… – Hide quoted text — Show quoted text -> Does hot weather affect rashes and such with Lupus ?

Response:

The heat really bothers me. I get hives when over heated. Talk about itch! I also notice that I get a rash that is, or is like, a heat rash. My face gets very flushed, my heart pounds, and I feel sick to my stomach. That is why we got air conditioning last summer. It is funny because I can’t stand the cold either. Guess you might say that I am never happy. <g> BJ-Sk. Canada "Kimby" <Kimd…@adelphia.net> wrote in message

news:WD9Ha.2333$Hw.2130649@news2.news.adelphia.net… – Hide quoted text — Show quoted text -> Does hot weather affect rashes and such with Lupus ?

Response:

I am just the opposite. My lupus always is better in the warm weather, awful all winter long. On Mon, 16 Jun 2003 02:07:50 GMT, "Kimby" <Kimd…@adelphia.net> wrote: – Hide quoted text — Show quoted text ->Does hot weather affect rashes and such with Lupus ?

Response:

Question:

 Hi all…                  I have written before asking for help with red cheeks and eyelid rash, the dr. gave me cream but it did nothing.         ~~~~~  So I did alot of reading and searching, I read that Evening Primrose Oil , Calendula Ointment, and also Camamile warm wet tea bags on the skin might help.         ~~~~~  Well I am using them all for a week now and have fantastic relief! The pain, itching and swelling are so much better. I don’t even want to dig at my eyes anymore. I odn’t need to hide them behind sunglasses.          ~~~~~  You might want to ask your dr. and read up on them, as I am not a professional. But I hope I have helped someone. Now I wish we could get rid of this Lupus as easy!              God bless and                 Happy Mothers Day       hugs..                       Jacqueline             " Proud of our troops "      

Response:

Jacqueline, That is fantastic news that you found some help for your red cheeks and eyelids. Thanks for passing on what worked for you. Hugs, Sherry "Jacqueline" <Jacqu…@webtv.net> wrote in message

news:10532-3EAB64AA-586@storefull-2336.public.lawson.webtv.net… – Hide quoted text — Show quoted text -> Hi all… >                I have written before asking for help with red cheeks and > eyelid rash, the dr. gave me cream but it did nothing. >         ~~~~~ >  So I did alot of reading and searching, > I read that Evening Primrose Oil , Calendula Ointment, and also Camamile > warm wet tea bags on the skin might help. >         ~~~~~ >  Well I am using them all for a week now and have fantastic relief! The > pain, itching and swelling are so much better. I don’t even want to dig > at my eyes anymore. > I odn’t need to hide them behind sunglasses. >          ~~~~~ >  You might want to ask your dr. and read up on them, as I am not a > professional. > But I hope I have helped someone. Now I wish we could get rid of this > Lupus as easy! >              God bless and >                 Happy Mothers Day >       hugs.. >                       Jacqueline >             " Proud of our troops "

Response:

Question:

- Hide quoted text — Show quoted text -Grace Casselman <gr…@casselman.net> wrote in message <news:3E2F4DAE.F7EA065E@casselman.net>… > I hear you, Rebecca. I’ve had some issues with hives and rashes at points over > the last year, and it’s terrible; especially on the face. > Most lately, I’ve been sometimes waking up to find a HUGE itchy raised red welt > somewhere on me; my leg… even my neck… but then, so far, within hours it > absolutely disappears. It’s weird, and not really an issue, but my fear is > instead of them quickly going away, someday I’ll find myself coated in them… > When I was in the hospital, I had a butterfly rash variation, in that I would > get a pattern of bright red on my (usually pale) cheeks. And visitors would > remark cheerily on it. "Oh, you’ve got some color!" > I hated that. "It’s not color!" I’d protest…(At least not "good" color…) > Grace.

well  i have had the butterfly rash from the beginning  since i was 13 not fun!!!      highest sun block and i dont remember what a tan is !!!  lol  but lately i get rashes on the hands and feet not sure if lupus related or not they itch but then go away after a couple of hours !!!  leaving me with raw skin for a day which sucks!!  but please wear the sunblock it does help 45 is the one i use it seems to work the best anything higher does the same!!!   TRINITY

Response:

I hear you, Rebecca. I’ve had some issues with hives and rashes at points over the last year, and it’s terrible; especially on the face. Most lately, I’ve been sometimes waking up to find a HUGE itchy raised red welt somewhere on me; my leg… even my neck… but then, so far, within hours it absolutely disappears. It’s weird, and not really an issue, but my fear is instead of them quickly going away, someday I’ll find myself coated in them… When I was in the hospital, I had a butterfly rash variation, in that I would get a pattern of bright red on my (usually pale) cheeks. And visitors would remark cheerily on it. "Oh, you’ve got some color!" I hated that. "It’s not color!" I’d protest…(At least not "good" color…) Grace.

Response:

I hadn’t even thought of sunblock.  It’s been so rainy, foggy, ….wintery here;  I never even thought the sun could sneak up on me like it did.  Live and learn I guess. Rebecca "Janers" <rojak…@bright.net> wrote in message

news:E1EX9.6813$37.786710@cletus.bright.net… – Hide quoted text — Show quoted text -> Rebecca > Please when outside, wear a hat or at least use sun block.  That might help > the rash from getting out of hand for "some" of us. > Then there are those that IT just is there. > I personally do not have that butterfly rash, but have rashes on my head > and back and hands and where ever LOL.  But Once in a "blue" moon, and > really NOT moom, it will pop out on my face. > I have my car windows tinted and that helps.  But generally do not go > outside with out my hat or sun block. > Try doing that and see if it helps.  IF the rash gets to irritating?  Get a > dermy to see you.  I use betamethazone on my rashes and it does tone it > down some.  That is prescription and cortisone cream. > good luck. > don’t be upset, just try to control it, with things to help > hugs > janers

Response:

Rebecca Please when outside, wear a hat or at least use sun block.  That might help the rash from getting out of hand for "some" of us. Then there are those that IT just is there. I personally do not have that butterfly rash, but have rashes on my head and back and hands and where ever LOL.  But Once in a "blue" moon, and really NOT moom, it will pop out on my face. I have my car windows tinted and that helps.  But generally do not go outside with out my hat or sun block. Try doing that and see if it helps.  IF the rash gets to irritating?  Get a dermy to see you.  I use betamethazone on my rashes and it does tone it down some.  That is prescription and cortisone cream. good luck. don’t be upset, just try to control it, with things to help hugs janers

Response:

I have only had fleeting facial rashes, one time that was shaped in rings! That was years ago.  I do show a strong facial rash after I shower; it is in certain spots on my face that I can always note there is a barely perceptible color change.  I have persistent erythema on my nose, neck and upper chest, and people are always mentioning that I "went out and got too much sun"!  I always wear the Oil of Olay complete moisturizer with 15 sunblock; I have found it to be less sticky, less smelly, and good for my skin. Also sometimes an antifugal, such as nizoral can help.  My brother had a persistent rash on his face, it went away completely with nizoral. just my two cents. Mary "Janers" <rojak…@bright.net> wrote in message

news:E1EX9.6813$37.786710@cletus.bright.net… – Hide quoted text — Show quoted text -> Rebecca > Please when outside, wear a hat or at least use sun block.  That might help > the rash from getting out of hand for "some" of us. > Then there are those that IT just is there. > I personally do not have that butterfly rash, but have rashes on my head > and back and hands and where ever LOL.  But Once in a "blue" moon, and > really NOT moom, it will pop out on my face. > I have my car windows tinted and that helps.  But generally do not go > outside with out my hat or sun block. > Try doing that and see if it helps.  IF the rash gets to irritating?  Get a > dermy to see you.  I use betamethazone on my rashes and it does tone it > down some.  That is prescription and cortisone cream. > good luck. > don’t be upset, just try to control it, with things to help > hugs > janers

Response:

I can hardly believe this!!   I went to the grocery store yesterday, and while driving home (in the beautiful sunlight) my cheeks started itching.  I ended up with this rash on the right AND left side of my face!  It looked kind of like hives that were a little bit flat.  But definately a butterfly shape!!  Then it just burned.  Is this what this is?? I just about cried.  I was hoping this would be the 1 symptom I didn’t get.  It’s awful having to see something to remind  you you’re sick. Rebecca

Response:

John Kakouris wrote: > I can hardly believe this!!   I went to the grocery store yesterday, and > while driving home (in the beautiful sunlight) my cheeks started itching.  I > ended up with this rash on the right AND left side of my face!  It looked > kind of like hives that were a little bit flat.  But definately a butterfly > shape!!  Then it just burned.  Is this what this is?? I just about cried.  I > was hoping this would be the 1 symptom I didn’t get.  It’s awful having to > see something to remind  you you’re sick. > Rebecca

((((Rebecca)))) I’m sorry you got the rash now too.  I have had exactly what you describe, like hives but flatter, and then just redness on the cheeks and forhead, and chin too sometimes, and it’s sometimes itchy and irritated.  It’s a bummer to have to deal with yet another symptom.  I don’t know if mine has anything to do with the sun, but I know it got really bad when I was going to school, and by the end of the day, under those danged flourescent lights, I’d get home and be so red with those flat bumps that you described.  Yuck!  But there are worse symptoms, right?  I try to console myself with that fact.   And maybe some chocolate.  ;) -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/stills/webpage.html ~Integrity~ Integrity is one of the several paths. It distinguishes itself from the others because it is the right path… and the only one upon which you will never get lost.                                 -M.H. McKee

Response:

Question:

I just got my blood test results back from my doctor, and when I asked what the ANA was, the nurse said it was just "negative", but no numbers or anything.  I know that it’s supposed to be negative, so good news there, but I’m wondering how to find out what the actual numbers are. Has anyone had this type of result from an ANA test before? TIA -Sharon — Clear your mind, relax and float downstream.

Response:

"SPerloff" <SPerl…@yahoo.com> wrote in message

news:3D5AA56F.7020702@yahoo.com… > I just got my blood test results back from my doctor, and when I asked > what the ANA was, the nurse said it was just "negative", but no numbers > or anything.  I know that it’s supposed to be negative, so good news > there, but I’m wondering how to find out what the actual numbers are. > Has anyone had this type of result from an ANA test before?

Negative means the meds you’re on are working.  At least that is how it was explained to me.

Response:

On Wed, 14 Aug 2002 14:46:07 -0400, SPerloff <SPerl…@yahoo.com> wrote: >Has anyone had this type of result from an ANA test before?

it depends on the lab.  Most use a titre so would say it was 1:40 or less for a negative value. Some use a different scale which I have yet to figure out or be told what it is comparable to and in that case it could be described simply as "negative".

Response:

J Rogow wrote: > "SPerloff" <SPerl…@yahoo.com> wrote in message > news:3D5AA56F.7020702@yahoo.com… >>I just got my blood test results back from my doctor, and when I asked >>what the ANA was, the nurse said it was just "negative", but no numbers >>or anything.  I know that it’s supposed to be negative, so good news >>there, but I’m wondering how to find out what the actual numbers are. >>Has anyone had this type of result from an ANA test before? > Negative means the meds you’re on are working.  At least that > is how it was explained to me.

I *wish* I had meds that were working!  lol  I am on *nothing* right now!  I am losing a pound a day because I can’t eat anything, and the only results my doc got from the blood tests was that I have RA.  Can that cause my GI probs, or is it just a raging case of IBS? Dizzy and hungry, -Sharon — Clear your mind, relax and float downstream.

Response:

J Rogow wrote: > "SPerloff" <SPerl…@yahoo.com> wrote in message > news:3D5AA56F.7020702@yahoo.com… > > I just got my blood test results back from my doctor, and when I asked > > what the ANA was, the nurse said it was just "negative", but no numbers > > or anything.  I know that it’s supposed to be negative, so good news > > there, but I’m wondering how to find out what the actual numbers are. > > Has anyone had this type of result from an ANA test before? > Negative means the meds you’re on are working.  At least that > is how it was explained to me.

corticosteroids right, like Prenisone? (any others?) and that’s why the other bloodwork is important too, right? Sharon should get a copy of her labs. JMO J

Response:

Usually negative means less than 1:40 but it depends on the lab.    RA can cause gut problems as can IBS (obviously) what would make the distinction for me would be the rest of your bloods – what is your RF ESR CRP etc?  If elevated, they would indicate rheumatoid activity and point to that as the cause of your unhappy tummy…If they are all pretty good then its aloe vera and slippery elm for you, my dear! I’d be interested to see what the results are Lyndal "SPerloff" <SPerl…@yahoo.com> wrote in message

news:3D5AA56F.7020702@yahoo.com… – Hide quoted text — Show quoted text -> I just got my blood test results back from my doctor, and when I asked > what the ANA was, the nurse said it was just "negative", but no numbers > or anything.  I know that it’s supposed to be negative, so good news > there, but I’m wondering how to find out what the actual numbers are. > Has anyone had this type of result from an ANA test before? > TIA > -Sharon > — > Clear your mind, relax and float downstream.

Response:

Hi Sharon, Aren’t you on any drugs for your RA? There are a wide range of drugs used for that sa, prednisone, methotrexate, gold, and numerous others. RA affects joints, but other organs such as heart and lungs.I don’t know about GI problems, but it attacks connective tissue so why not? A friend of mine has it. Besides joint pain and fatigue, she looses her voice, and her throat swells as if she were having an allergic reaction. It took a long time for them to figure out the problem. Push a little if you feel up to that. You should be able to talk to the doctor and get a printed copy of your lab results. BJ-Sk.Canada "SPerloff" <SPerl…@yahoo.com> wrote in message

news:3D5AC01C.6070904@yahoo.com… – Hide quoted text — Show quoted text -> J Rogow wrote: > > "SPerloff" <SPerl…@yahoo.com> wrote in message > > news:3D5AA56F.7020702@yahoo.com… > >>I just got my blood test results back from my doctor, and when I asked > >>what the ANA was, the nurse said it was just "negative", but no numbers > >>or anything.  I know that it’s supposed to be negative, so good news > >>there, but I’m wondering how to find out what the actual numbers are. > >>Has anyone had this type of result from an ANA test before? > > Negative means the meds you’re on are working.  At least that > > is how it was explained to me. > I *wish* I had meds that were working!  lol  I am on *nothing* right > now!  I am losing a pound a day because I can’t eat anything, and the > only results my doc got from the blood tests was that I have RA.  Can > that cause my GI probs, or is it just a raging case of IBS? > Dizzy and hungry, > -Sharon > — > Clear your mind, relax and float downstream.

Response:

Lyndal Parker-Newlyn and Phill Newlyn wrote: – Hide quoted text — Show quoted text -> Usually negative means less than 1:40 but it depends on the lab.    RA can > cause gut problems as can IBS (obviously) what would make the distinction > for me would be the rest of your bloods – what is your RF ESR CRP etc?  If > elevated, they would indicate rheumatoid activity and point to that as the > cause of your unhappy tummy…If they are all pretty good then its aloe vera > and slippery elm for you, my dear! > I’d be interested to see what the results are > Lyndal > "SPerloff" <SPerl…@yahoo.com> wrote in message > news:3D5AA56F.7020702@yahoo.com… >>I just got my blood test results back from my doctor, and when I asked >>what the ANA was, the nurse said it was just "negative", but no numbers >>or anything.  I know that it’s supposed to be negative, so good news >>there, but I’m wondering how to find out what the actual numbers are. >>Has anyone had this type of result from an ANA test before? >>TIA >>-Sharon >>– >>Clear your mind, relax and float downstream.

Thanks Lyndal.  :)  I have an elevated RF by 2 (2 what, I don’t know! lol), but I don’t know any of the other tests, or if they were done.  I would have to request a copy of the lab work, which I will do, but today I was just praying to get a rx of donnatol from my new doc.  Thank god he gave it to me!!  I’m picking the wonderful antispasmotics up tomorrow when they come in to the pharmacy!!  I don’t know if fms can be this bad, but I feel like there’s some thing wrong with me other than fms. My joints are swollen, I can’t eat anything but jello, and I am *so* dizzy!  My bloodwork never shows anything is wrong, but I feel like poo!   And I’m pretty sure I have some sort of rash on my face, which made me even more sure I have lupus.  I was always told, my entire life, that my skin complexion was perfect.  (I begged to differ though, lol), but now I have red dots puffing out of my face, and redness on my cheeks, and sometimes my forehead.  I can’t wait until I see my rheumy, but I don’t know if he is good, because I never went to him before.  I hope he’s worth the wait. Thanks for listening.  Right now, I’m thinking to go for the taco bell, and scr*& my gut for a night!  I’m so hungry!  We’ll see. -Sharon — Clear your mind, relax and float downstream.

Response:

BJ wrote: > Hi Sharon, > Aren’t you on any drugs for your RA? There are a wide range of drugs used > for that sa, prednisone, methotrexate, gold, and numerous others. RA affects > joints, but other organs such as heart and lungs.I don’t know about GI > problems, but it attacks connective tissue so why not? A friend of mine has > it. Besides joint pain and fatigue, she looses her voice, and her throat > swells as if she were having an allergic reaction. It took a long time for > them to figure out the problem. Push a little if you feel up to that. You > should be able to talk to the doctor and get a printed copy of your lab > results.

I was just told today that my RF was elevated, so I didn’t know I possibly had RA until today.  Would you believe no one tested me for that after seven years!!  UGGHH!  The swollen throat thing sounds familiar.  I once went to my pcp, telling him I have a swollen gland on and off, and he told me that my glands are fine.  I wonder if it was the RA acting up and I didn’t know it. -Sharon — Clear your mind, relax and float downstream.

Response:

My mother has RA and has had tummy troubles alot.  She’s had RA  for 20 yrs. She takes some type of acid reducer and has to watch her diet.  But all in all, she can work with it.  Hope things get better your way. Oh, BTW, how does the aloe vera and slippery elm work.  I thought slippery elm helped you to go in cases of constipation?  does it also help soothe the colon? dawn "SPerloff" <SPerl…@yahoo.com> wrote in message

news:3D5AD9C2.8070003@yahoo.com… – Hide quoted text — Show quoted text -> Lyndal Parker-Newlyn and Phill Newlyn wrote: > > Usually negative means less than 1:40 but it depends on the lab.    RA can > > cause gut problems as can IBS (obviously) what would make the distinction > > for me would be the rest of your bloods – what is your RF ESR CRP etc? If > > elevated, they would indicate rheumatoid activity and point to that as the > > cause of your unhappy tummy…If they are all pretty good then its aloe vera > > and slippery elm for you, my dear! > > I’d be interested to see what the results are > > Lyndal > > "SPerloff" <SPerl…@yahoo.com> wrote in message > > news:3D5AA56F.7020702@yahoo.com… > >>I just got my blood test results back from my doctor, and when I asked > >>what the ANA was, the nurse said it was just "negative", but no numbers > >>or anything.  I know that it’s supposed to be negative, so good news > >>there, but I’m wondering how to find out what the actual numbers are. > >>Has anyone had this type of result from an ANA test before? > >>TIA > >>-Sharon > >>– > >>Clear your mind, relax and float downstream. > Thanks Lyndal.  :)  I have an elevated RF by 2 (2 what, I don’t know! > lol), but I don’t know any of the other tests, or if they were done.  I > would have to request a copy of the lab work, which I will do, but today > I was just praying to get a rx of donnatol from my new doc.  Thank god > he gave it to me!!  I’m picking the wonderful antispasmotics up tomorrow > when they come in to the pharmacy!!  I don’t know if fms can be this > bad, but I feel like there’s some thing wrong with me other than fms. > My joints are swollen, I can’t eat anything but jello, and I am *so* > dizzy!  My bloodwork never shows anything is wrong, but I feel like poo! >   And I’m pretty sure I have some sort of rash on my face, which made me > even more sure I have lupus.  I was always told, my entire life, that my > skin complexion was perfect.  (I begged to differ though, lol), but now > I have red dots puffing out of my face, and redness on my cheeks, and > sometimes my forehead.  I can’t wait until I see my rheumy, but I don’t > know if he is good, because I never went to him before.  I hope he’s > worth the wait. > Thanks for listening.  Right now, I’m thinking to go for the taco bell, > and scr*& my gut for a night!  I’m so hungry!  We’ll see. > -Sharon > — > Clear your mind, relax and float downstream.

Response:

dawn wrote: > My mother has RA and has had tummy troubles alot.  She’s had RA  for 20 yrs. > She takes some type of acid reducer and has to watch her diet.  But all in > all, she can work with it.  Hope things get better your way. > Oh, BTW, how does the aloe vera and slippery elm work.  I thought slippery > elm helped you to go in cases of constipation?  does it also help soothe the > colon? > dawn

Thanks Dawn.  I actually ate some food tonight, and no pain!  <bg> Maybe I’m on my way up from this flare. As for Aloe Vera, I drink it in all of my liquids for the day, even water.  It helps soothe the GI system.  Really works! I have a great brand that tastes like water, if you’re interested. (Some of them taste yucky.) I found it when working in a health food store. -Sharon — Clear your mind, relax and float downstream.

Response:

slippery elm helps to reduce spasm – spasm causes pain, can worsen pain of constipatio (spasm around hard feces and not allow it to pass) or hurry up wind and diarrhoea.  aloe vera is soothing for the bowel just like the skin…takes away the sore, red irritated bits so they work better lots of my patinets find the combination works well Lyndal "dawn" <kend…@samlink.com> wrote in message

news:1XD69.2616$Re1.84313@eagle.america.net… – Hide quoted text — Show quoted text -> My mother has RA and has had tummy troubles alot.  She’s had RA  for 20 yrs. > She takes some type of acid reducer and has to watch her diet.  But all in > all, she can work with it.  Hope things get better your way. > Oh, BTW, how does the aloe vera and slippery elm work.  I thought slippery > elm helped you to go in cases of constipation?  does it also help soothe the > colon? > dawn > "SPerloff" <SPerl…@yahoo.com> wrote in message > news:3D5AD9C2.8070003@yahoo.com… > > Lyndal Parker-Newlyn and Phill Newlyn wrote: > > > Usually negative means less than 1:40 but it depends on the lab.    RA > can > > > cause gut problems as can IBS (obviously) what would make the > distinction > > > for me would be the rest of your bloods – what is your RF ESR CRP etc? > If > > > elevated, they would indicate rheumatoid activity and point to that as > the > > > cause of your unhappy tummy…If they are all pretty good then its aloe > vera > > > and slippery elm for you, my dear! > > > I’d be interested to see what the results are > > > Lyndal > > > "SPerloff" <SPerl…@yahoo.com> wrote in message > > > news:3D5AA56F.7020702@yahoo.com… > > >>I just got my blood test results back from my doctor, and when I asked > > >>what the ANA was, the nurse said it was just "negative", but no numbers > > >>or anything.  I know that it’s supposed to be negative, so good news > > >>there, but I’m wondering how to find out what the actual numbers are. > > >>Has anyone had this type of result from an ANA test before? > > >>TIA > > >>-Sharon > > >>– > > >>Clear your mind, relax and float downstream. > > Thanks Lyndal.  :)  I have an elevated RF by 2 (2 what, I don’t know! > > lol), but I don’t know any of the other tests, or if they were done.  I > > would have to request a copy of the lab work, which I will do, but today > > I was just praying to get a rx of donnatol from my new doc.  Thank god > > he gave it to me!!  I’m picking the wonderful antispasmotics up tomorrow > > when they come in to the pharmacy!!  I don’t know if fms can be this > > bad, but I feel like there’s some thing wrong with me other than fms. > > My joints are swollen, I can’t eat anything but jello, and I am *so* > > dizzy!  My bloodwork never shows anything is wrong, but I feel like poo! > >   And I’m pretty sure I have some sort of rash on my face, which made me > > even more sure I have lupus.  I was always told, my entire life, that my > > skin complexion was perfect.  (I begged to differ though, lol), but now > > I have red dots puffing out of my face, and redness on my cheeks, and > > sometimes my forehead.  I can’t wait until I see my rheumy, but I don’t > > know if he is good, because I never went to him before.  I hope he’s > > worth the wait. > > Thanks for listening.  Right now, I’m thinking to go for the taco bell, > > and scr*& my gut for a night!  I’m so hungry!  We’ll see. > > -Sharon > > — > > Clear your mind, relax and float downstream.

Response:

Thanks for the explaination:) dawn "Lyndal Parker-Newlyn and Phill Newlyn" <l.p.new…@bigpond.com> wrote in message news:jtH69.6534$g9.22217@newsfeeds.bigpond.com… – Hide quoted text — Show quoted text -> slippery elm helps to reduce spasm – spasm causes pain, can worsen pain of > constipatio (spasm around hard feces and not allow it to pass) or hurry up > wind and diarrhoea.  aloe vera is soothing for the bowel just like the > skin…takes away the sore, red irritated bits so they work better > lots of my patinets find the combination works well > Lyndal > "dawn" <kend…@samlink.com> wrote in message > news:1XD69.2616$Re1.84313@eagle.america.net… > > My mother has RA and has had tummy troubles alot.  She’s had RA  for 20 > yrs. > > She takes some type of acid reducer and has to watch her diet.  But all in > > all, she can work with it.  Hope things get better your way. > > Oh, BTW, how does the aloe vera and slippery elm work.  I thought slippery > > elm helped you to go in cases of constipation?  does it also help soothe > the > > colon? > > dawn > > "SPerloff" <SPerl…@yahoo.com> wrote in message > > news:3D5AD9C2.8070003@yahoo.com… > > > Lyndal Parker-Newlyn and Phill Newlyn wrote: > > > > Usually negative means less than 1:40 but it depends on the lab. RA > > can > > > > cause gut problems as can IBS (obviously) what would make the > > distinction > > > > for me would be the rest of your bloods – what is your RF ESR CRP etc? > > If > > > > elevated, they would indicate rheumatoid activity and point to that as > > the > > > > cause of your unhappy tummy…If they are all pretty good then its > aloe > > vera > > > > and slippery elm for you, my dear! > > > > I’d be interested to see what the results are > > > > Lyndal > > > > "SPerloff" <SPerl…@yahoo.com> wrote in message > > > > news:3D5AA56F.7020702@yahoo.com… > > > >>I just got my blood test results back from my doctor, and when I asked > > > >>what the ANA was, the nurse said it was just "negative", but no > numbers > > > >>or anything.  I know that it’s supposed to be negative, so good news > > > >>there, but I’m wondering how to find out what the actual numbers are. > > > >>Has anyone had this type of result from an ANA test before? > > > >>TIA > > > >>-Sharon > > > >>– > > > >>Clear your mind, relax and float downstream. > > > Thanks Lyndal.  :)  I have an elevated RF by 2 (2 what, I don’t know! > > > lol), but I don’t know any of the other tests, or if they were done. I > > > would have to request a copy of the lab work, which I will do, but today > > > I was just praying to get a rx of donnatol from my new doc.  Thank god > > > he gave it to me!!  I’m picking the wonderful antispasmotics up tomorrow > > > when they come in to the pharmacy!!  I don’t know if fms can be this > > > bad, but I feel like there’s some thing wrong with me other than fms. > > > My joints are swollen, I can’t eat anything but jello, and I am *so* > > > dizzy!  My bloodwork never shows anything is wrong, but I feel like poo! > > >   And I’m pretty sure I have some sort of rash on my face, which made me > > > even more sure I have lupus.  I was always told, my entire life, that my > > > skin complexion was perfect.  (I begged to differ though, lol), but now > > > I have red dots puffing out of my face, and redness on my cheeks, and > > > sometimes my forehead.  I can’t wait until I see my rheumy, but I don’t > > > know if he is good, because I never went to him before.  I hope he’s > > > worth the wait. > > > Thanks for listening.  Right now, I’m thinking to go for the taco bell, > > > and scr*& my gut for a night!  I’m so hungry!  We’ll see. > > > -Sharon > > > — > > > Clear your mind, relax and float downstream.

Response:

Question:

hi      I have been to the dr. several times for a really bad red scaly itchie burning rash on both eye lids areas and it looks too like I have black eyes. he said try aveeno…no luck. any ideas?  ALSO……    what do you take when you feel that all over sickie feeling running thru your body like a river. It even makes you feel like you want to toss your cookies. no energy, you feel homebound. The ibs does not help either.  take care all…sorry you all are sick with this illness,      hugs and thanks              Jacquie        GOD BLESS you and yours…

Response:

On Mon, 25 Mar 2002 08:33:37 -0800 (PST), Jacqu…@webtv.net (Jacqueline)  wrote: >hi >     I have been to the dr. several times for a really bad red scaly >itchie burning rash on both eye lids areas and it looks too like I have >black eyes. he said try aveeno…no luck. any ideas?

review your lotions, soaps, shampoos, conditioners, nail polish, etc. [1] they may not be related but I found that already sensitive eyelids got this way when I used any kind of nail polish and certain kinds of lotion.  cortisone is not recommended on this already thin, delicate tissue. may want to try something like shea butter (pure) or petroleum jelly to alleviate the itching.  is this a dermatologist? if not, try to get in to see a derm – they will have more in their arsenal to help. > ALSO……    what do you take when you feel that all over sickie >feeling running thru your body like a river. It even makes you feel like >you want to toss your cookies. no energy, you feel homebound. >The ibs does not help either.

lie down, whimper and feel sorry for myself until I’m sick of being a whimpering baby then get up an do too much until I have to lie down again.   but seriously, seven up, crackers and writing a long snail mail to my friend. pamper yourself. Blessed Wishes, KCat [1] these items need not be "new" – you can develop allergies to stuff you’ve used for years and lupies are especially prone to this. a process of elimination might be in order. I use a pure oatmeal soap (no perfumes, not aveeno – too drying) and shea butter.

Response:

Hi, I too get the red, itchy and sometimes scaly rash at the crease in my eyelid…and it sometimes turns bluish so that it looks like it is bruised or that my eyes are ‘black’…I tried cortisone cream that I had for my skin rashes on my hands and arms but it wasn’t really that effective….I use ‘marcelle’ a hypoallergenic moisture cream and I buy one tube specially for eyes (the delicate tissues around the eyes are very thin and if you use too much moisture cream or sweat alot you can develope skin tags or bumps which are clogged pores) so you want to use only creams or ointments made specially for the eyelids. My 2cents worth again, Shelagh at <a href="http://www3.telus.net/valleylupus/index.html"> Lupus  Invisible in Plain Sight</a> Lupus Information and Support Contact "KCat" <kcdoc…@ghg.net> wrote in message

news:jjsu9uof67rdrcktvfbecdktftqqafda5p@4ax.com… | On Mon, 25 Mar 2002 08:33:37 -0800 (PST), Jacqu…@webtv.net | (Jacqueline)  wrote:

| | >hi | >     I have been to the dr. several times for a really bad red scaly | >itchie burning rash on both eye lids areas and it looks too like I have | >black eyes. he said try aveeno…no luck. any ideas? | | review your lotions, soaps, shampoos, conditioners, nail polish, etc. | [1] they may not be related but I found that already sensitive eyelids | got this way when I used any kind of nail polish and certain kinds of | lotion.  cortisone is not recommended on this already thin, delicate | tissue. may want to try something like shea butter (pure) or petroleum | jelly to alleviate the itching.  is this a dermatologist? if not, try | to get in to see a derm – they will have more in their arsenal to | help. | | > ALSO……    what do you take when you feel that all over sickie | >feeling running thru your body like a river. It even makes you feel like | >you want to toss your cookies. no energy, you feel homebound. | >The ibs does not help either. | | lie down, whimper and feel sorry for myself until I’m sick of being a | whimpering baby then get up an do too much until I have to lie down | again. | | but seriously, seven up, crackers and writing a long snail mail to my | friend. pamper yourself. | | Blessed Wishes, | KCat | | [1] these items need not be "new" – you can develop allergies to stuff | you’ve used for years and lupies are especially prone to this. a | process of elimination might be in order. I use a pure oatmeal soap | (no perfumes, not aveeno – too drying) and shea butter.

Response:

Question:

Hi Julia, so sorry you are having problems with the Plaquinel.  I was on quinicrine for a while, and went off because I turned yellow/orange.  It can look good on some people, but not on me.  It felt OK but I had a better response with Plaquinel.  The others know more about it, but I didn’t notice any real bad effects.  I really hope you don’t either. Good Luck, Ginger

Response:

Hi… Jumping in too. I get the rash on my scalp because have heard it is from the sun… so i wear a hat outside… but then I also get overheated in the Florida sun and the itching can be intense on my scalp or just when I start to sweat and I sweat like a wet mop in a matter or momment. Then it looks like little artillary has gone off on my scalp and the doctor game me some steroid stuff to put on my scalp when it gets like that and it does help. I use an 70spf sunblock at times and that helps too but not when the heat gets so profuse and when I am overheated and sweating. I have heard long ago that the plaquenil can cause this but I had this before the plaquenil so I think it is just the lupus think that causes it or auto-immunity in general. I also get or had psoriasis, dermatitis, ecsema so it is not contained to one skin problem either. Those hive like patches and the little cluster pimple patches are familiar with also petechie and white zits. What a party huh!? I think i am very prone to a heat rash too which is the little pimple patches. Has anyone developed wart like things that peel off the top like dry skin and is flat but can be odd shaped… i got them too. I am thinking about a role in the new "Creature of The Black Lagoon."  Fortuanately, I do not have everything at one time BUT i also stay in a whole lot! Always, cloud

Response:

argh! that’s really the only appropriate way to begin this post. For the past 2.5 years I’ve been on plaquenil – throw in a some NSAIDs that didn’t work, an intolerance to steroids (yes, it’s strange, but everytime we try there are problems) and a weekly MTX shot…it’s all fine…but on Friday my ophthamologist said that she was concerned about the plaquenil because I’ve developed maculopathy.  Called my rheumy who said that I must immediately stop the meds.  He said that if it gets bad in the next month (since I won’t see him until then) I can go on quinacrine.  anyone on it? what are the dangers?  I know that my eye sight will be spared, but what about other stuff?  I’m a wreck…I feel like my list of options is getting smaller and smaller and all I want to do is cry. ok…I got that out of my system…sorry you had to witness that.  but seriously, quinacrine seems to be the only choice I have if I need something.  What’s the deal with it being used in female sterilization?  and what’s all the stuff about Sanofi stopping it’s production of Atabrine (name brand version)?  I’m confused, and honestly a little frightened about the choices I’m going to have to be making in the near future.  Anyone’s experience or knowledge would be GREATLY appreciated. I hope that you are all doing well. take care…and thanks for listening. -julia

Response:

Hi Julia, There have been a lot of questions about plaquenil lately. I am not on it, so unfortunately I can’t help. Would Imuran be an option? I am on 150mgs per day and have been okay as far as side effects. I am answering you, not because I have any great insights, but because I do have a sympathic ear and understand your desire to cry. " Tears lubricate the soul." Regards, BJ "julia" <julia_fridmanNOS…@hotmail.com> wrote in message

news:SSqw7.41831$Xk4.3096855@news1.rdc1.sdca.home.com… – Hide quoted text — Show quoted text -> argh! > that’s really the only appropriate way to begin this post. > For the past 2.5 years I’ve been on plaquenil – throw in a some NSAIDs that > didn’t work, an intolerance to steroids (yes, it’s strange, but everytime we > try there are problems) and a weekly MTX shot…it’s all fine…but on > Friday my ophthamologist said that she was concerned about the plaquenil > because I’ve developed maculopathy.  Called my rheumy who said that I must > immediately stop the meds.  He said that if it gets bad in the next month > (since I won’t see him until then) I can go on quinacrine.  anyone on it? > what are the dangers?  I know that my eye sight will be spared, but what > about other stuff?  I’m a wreck…I feel like my list of options is getting > smaller and smaller and all I want to do is cry. > ok…I got that out of my system…sorry you had to witness that.  but > seriously, quinacrine seems to be the only choice I have if I need > something.  What’s the deal with it being used in female sterilization? and > what’s all the stuff about Sanofi stopping it’s production of Atabrine (name > brand version)?  I’m confused, and honestly a little frightened about the > choices I’m going to have to be making in the near future.  Anyone’s > experience or knowledge would be GREATLY appreciated. > I hope that you are all doing well. > take care…and thanks for listening. > -julia

Response:

In article <SSqw7.41831$Xk4.3096…@news1.rdc1.sdca.home.com>, julia <julia_fridmanNOS…@hotmail.com> wrote:

[...] >what’s all the stuff about Sanofi stopping it’s production of Atabrine (name >brand version)?  I’m confused, and honestly a little frightened about the >choices I’m going to have to be making in the near future.  Anyone’s >experience or knowledge would be GREATLY appreciated.

You know, I tried to look up Atabrine in my 1998 PDR, and it’s not listed.  Sanofi’s other antimalerial, Aralen is.  For the record, Aralen is more toxic than Plaquenil, so run if someone suggests that.  Quinicrine is suggested in the Merck Manual, but it may have orphan drug status at this point (the patent has run out and no one owns it).  I’d suggest reposting your question to sci.med.pharmacy where a real pharmacist can look up the drug’s current status.  Among other things, a lot of drug companies have been merging and/or closing down and selling off their patents to other companies.  The pharmacy guys complained that _their_ references were often useless, there’s been so much buying and selling. But if anyone could tell you who’s manufacturing Atabrine, what the drug’s status is, and what the most common side effects people really have are, it’d be the guys in sci.med.pharmacy. — Lee M.Thompson-Herbert        l…@retro.com            KoX 1995, SP4 Head Muso, White Rats Morris Member, Knights of Xenu (1995).  Chaos Monger and Jill of All Trades. "A head-on collision between Morticia Adams and Martha Stewart"

Response:

Question:

Okay, I have heard Lupus can be confirmed through biopsing mouth ulcers, is this true even if there is a negative ANA?  I get them 1-2 times a month, and last a couple of days–it is pretty hard to get in to see my doctor, so I just made a call asking how I can get this checked out since I never seem to have one when I go in–I am waiting for the response.  I have one coming on now, but I don’t know how long it will stay, so making an appointment is useless, if its still here in the morning I can go in, but there is no telling if a doctor will be available–AND my doc is an ob/gyn, lol, how is he to do this? OH, my, I have an aweful vision of a speculum-this isn’t reassuring-lmao. Thanks again, Michelle

Response:

Michelle,   I am in the same situation right now.  I have had this mouth sore for about 3 weeks, and tried everything.  So I called rheumy who wanted to see me pronto. I got there and she told me that if indeed it was from the lupus, and I was getting a flair or in a flair, well she would have to up my medrol (cortisone).  So she looked in the mouth and guess what… She told me it was a yeast infection, and she was so happy that I did not have to up my medrol.  She also told me that anyone who is on oral cortisone, will indeed get yeast infections on and off, and the only way to cure it is to take medication.  so since I am also on a lot of medication, she prescribed mycelex lozenges, 5 a day for a week to 14 days.  I could of tried the liquid medication called nystatin swish, but she said it tasted awful so I and there is another one which begins with a Du something but it interacts with a lot of meds so that is a no no for a lot of people. I suggest you do like I did and let the doc see for them selves.  Even an ob doc could tell cause he deals with a lot of vaginal yeast infections and they are treated the same, except use of suppositories. Hope I have helped cause it is helping me…don’t taste good but it does seems to help. good luck janers

Response:

I haven’t heard of doing a biopsy of mouth ulcers to confirm lupus.  I have heard though of doing a skin biopsy for that purpose.  This is done by a dermatologist. Usually they prefer to biopsy an area where there is a rash in a sun exposed area as well as a second biopsy in a non-sun exposed area.  If there are no rashes, it’s possible too to biopsy normal appearing skin.  If the individual has lupus, even normal appearing skin may be able to confirm it through the lupus band test.   Perhaps what you’re thinking of regarding the mouth biopsy is a lip biopsy to test for Sjogrens.  That can be done by a dentist, oral surgeon or ENT. Sandra

Response:

Janers-    My mother just had surgery and had to use the nystatin swish because she was going to be intibated, the poor lady, they try to flavor that stuff like bananas, but it doesn’t work, she said it tastes like the vaginal yeast infection creams smell.  I opt not to take that route if offered….lol. Thanks for your response, Michelle

Response:

Sandra,   Thanks, my mind doesn’t remember things so well, I guess it was the Sjourns test I was remembering.  Well, I tried atleast…lol.  My doc atleast put it in the records, but I don’t fully agree with the treatment of Flonase–it’ll take care of the nose ulcers, but not the mouth, and its not caused by alergies-but it is a steroid and may reduce them, still, I don’t think even trying the Flonase is going to help any. Thanks, Michelle

Response:

I also have never heard of the mouth biopsy for Lupus. If it is sores causd by the lupus — usually Kenelog in Orabase will clear it up.

Response:

Michelle, Try taking L-Lysine.  It seems to help and I doubt that it can hurt anything.  I have seen others mention it on the group also. Sherry – Hide quoted text — Show quoted text –

Response:

Maybe you doctor suspects Sjogren’s Syndrome- dry mucous membranes- I had a biopsy done for this and I also have Lupus. Theresa

Response:

In article <26902-3AA829A5-…@storefull-628.iap.bryant.webtv.net>, Michelle <SabresGir…@webtv.net> wrote >Okay, I have heard Lupus can be confirmed through biopsing mouth ulcers,

I haven’t – are you thinking of Sjogrens? — Andy For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/> For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/> For my other interests <URL: http://www.kitzbuhel.demon.co.uk/>

Response:

Question:

Hi – I suspect I have lupus but the doctor claims nothing shows in my blood tests – despite a persistent rash of small round sensitive spots that blister and joint pain in my right foot and hip – he thinks the joint pain is sciaitica and a separate thing – I tried the only australian site I found on altavista which is in queensland but the links are not working to it!!!! Does anyone know of an Australian based web site or of a lupus centre that’s in sydney – my addie is frost-orc…@altavista.net I’ld really like to find out once and for all if there’s one underlying cause since I also sometimes get the "butterfly blush" even when I wear a sun hat and coverup sunscreen! and since I’m trying to get into acting as a profession I need to stabilise my skin!!! somehow thanking you in advance for any info received!!! Sent via Deja.com http://www.deja.com/

Response:

Hi, These are the groups in Australia (I can’t help much because I don’t know anything about Australian geography) and I got this off of the Lupus Around the World website (http://www.mtio.com/lupus/). Australia Lupus Support Group of Queensland 42 Jainba Street Indooroopilly Queensland 4068 Phone: 07-38789553 Lupus Association New South Wales P.O. Box 89 North Ryde 2113 Australia Victorian Lupus Association P.O. Box 8211F Melbourne, Australia 3000 Lupus Group of Western Australia 28 Elsfield Way Bassendean, West Australia 6161 Lupus Group of Western Australia St. Joseph’s Convent P.O. Box 503 South Perth, West Australia 6054 <frost-orc…@altavista.net> wrote in message

news:95ne4j$qbi$1@nnrp1.deja.com… – Hide quoted text — Show quoted text -> Hi – I suspect I have lupus but the doctor claims nothing shows in my > blood tests – despite a persistent rash of small round sensitive spots > that blister and joint pain in my right foot and hip – he thinks the > joint pain is sciaitica and a separate thing – I tried the only > australian site I found on altavista which is in queensland but the > links are not working to it!!!! > Does anyone know of an Australian based web site or of a lupus centre > that’s in sydney – > my addie is > frost-orc…@altavista.net > I’ld really like to find out once and for all if there’s one underlying > cause since I also sometimes get the "butterfly blush" even when I wear > a sun hat and coverup sunscreen! > and since I’m trying to get into acting as a profession I need to > stabilise my skin!!! somehow > thanking you in advance for any info received!!! > Sent via Deja.com > http://www.deja.com/

Response:

Hi, I am also from Sydney with SLE. There is a Lupus Association which is contactable via e-mail but unfortunately I do not know of any association that is on the net in Sydney. I pay $20.00 per year & get a very informative newsletter every month with a library of books to borrow on SLE. Their e-mail address is:  lupus…@ozemail.com.au I hope this is of help to you. Regards, Gail <frost-orc…@altavista.net> wrote in message

news:95ne4j$qbi$1@nnrp1.deja.com… – Hide quoted text — Show quoted text -> Hi – I suspect I have lupus but the doctor claims nothing shows in my > blood tests – despite a persistent rash of small round sensitive spots > that blister and joint pain in my right foot and hip – he thinks the > joint pain is sciaitica and a separate thing – I tried the only > australian site I found on altavista which is in queensland but the > links are not working to it!!!! > Does anyone know of an Australian based web site or of a lupus centre > that’s in sydney – > my addie is > frost-orc…@altavista.net > I’ld really like to find out once and for all if there’s one underlying > cause since I also sometimes get the "butterfly blush" even when I wear > a sun hat and coverup sunscreen! > and since I’m trying to get into acting as a profession I need to > stabilise my skin!!! somehow > thanking you in advance for any info received!!! > Sent via Deja.com > http://www.deja.com/

Response:

Question:

that’s great news, walt. aren’t you glad you moved east? diane, in virginia

Response:

Walt so happy for you…I have found women rheumy seem more concerned than men…I dont know why that is, but it works for me…gee maybe it is because women listen better…LOL

The male resident was a good listener too – no sexism please. <g Really I am happy for you.   I just wonder what they will diagnose you with..the rash on your foot, where is it on the insole or top of the foot..only reason is I had one on the inside bottom of my foot the arch area, and it was wild when my lupus went haywire, and left when I got controlled with cortisone…

The rash is on the top of my foot and toes, going up my ankle.  It is hard to describe, but I guess the best way to explain it is a lot of raised pinpoints that itch and hurt like mad. It responds to cortisone creams, but she wants me to try to not use one until I see the dermatologist.  She said that a rash on the bottom of my foot would have been "diagnostically definitive," but she didn’t say of what. Walt

Response:

that’s great news, walt. aren’t you glad you moved east? diane, in virginia

It’s coming Diane, it’s coming.  Going to take a little while longer though. Walt

Response:

Well my friends, I think I just had the best RD visit ever.  Thank you Dr. Susan for suggesting Dr. Zaminsky.

I’m glad that the new RD is a winner. Hopefully the tide is turning for you.

Response:

Sounds like you have a keeper with the new RD.  I’m glad to hear it. Sarah L "Friends are those people who know the words to the song in your heart and sing them back to you when you have forgotten the words."  (unattributed)

Response:

Walt When you find out what that rash is let me know… also could you maybe ask her what she meant by saying if it was on the bottom of the foot, it would hve been "diagnostically definitive"   ask her definite for what…. I went to 2 foot docs and they treated it as athletes foot and then used a combination of athlete’s ft cream and a cortisone cream and it never got better. then when they put me back on medrol bingo, it went away…so I just thought it was a lupus type skin rash…I get them other places.  but I won’t go into that.. Just let me know what she says,  Ok,  will be interesting for her opinion.. But the red raised pinpoint itch and hurt sounds very familiar…. Good luck Janers

Response:

Walt so happy for you…I have found women rheumy seem more concerned than men…I dont know why that is, but it works for me…gee maybe it is because women listen better…LOL Really I am happy for you.   I just wonder what they will diagnose you with..the rash on your foot, where is it on the insole or top of the foot..only reason is I had one on the inside bottom of my foot the arch area, and it was wild when my lupus went haywire, and left when I got controlled with cortisone… I think too that maybe you are on the right track when you got this doc… Good luck to you and hope you have some good Holidays and less damn pain Janers

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Good news , Walt. Have a happy Christmas. Ally – Hide quoted text — Show quoted text – Well my friends, I think I just had the best RD visit ever.  Thank you Dr. Susan for suggesting Dr. Zaminsky. The first thing to go right was that I actually managed to have a little flare going on the same day I had an RD visit.  That hasn’t happened in a long time.  Next, believe it or not, both Dr. Z and her resident actually listened to me.  Imagine that! You know, after having been ignored for so long, it was so reassuring to hear them chatting to each other as they examined me.  "Here, can you appreciate the capsule in this MIP?  There is also a boney prominence but the capsule is definitely inflamed?  And can you feel the heat from his left hand.  It’s definitely hotter than the right, but it is very subtle."  I actually almost cried – for joy.  She also said that I had "prominent MT heads" on my right foot now, something new even from last June. And she even had an explanation for what happens with my hip – sometimes is just collapses on me while I am walking.  As I described it to her she said, "Oh yes, that’s a muscle spasm."  Like duh, didn’t anyone else tell you that? So, here’s where we stand.  The azulfidine is history.  Neither of us thought it was doing anything now.  I am having a bunch of x-rays tomorrow, and she is reviewing the new films and comparing them with the old films that I brought in.  She also wants a report from the dermatologist I am seeing next week (I have this weird rash going on my foot, just my left one).  She also mentioned that it would be nice for her to see the rash I get when I take prednisone. We will get back together on January 4th and talk about the next step. She said that she will probably recommend MTX, but wants to see what happens without the azulfidine and see the films before she decides. She did say that she doesn’t think I have RA – my presentation is too atypical.  But I could tell that she is thinking something.  She wouldn’t say what, except to say that I didn’t fit any classic profiles, but she did say that she would have a better idea by the time we next met. So I am a happy camper – a sore, hurting happy camper, but still happy. Finally – VALIDATION! Walt

Response:

Great Walt,  Sorry you have to have a flare to show them but this doctor sounds to be made for you.  Moving, changing doctors, changing jobs, life itself can be very stressful and all things considered you have my permission to have a wonderful Christmas season while looking forward to Jan. 4 and further help from your new RD. Harv – Hide quoted text — Show quoted text – Well my friends, I think I just had the best RD visit ever.  Thank you Dr. Susan for suggesting Dr. Zaminsky. The first thing to go right was that I actually managed to have a little flare going on the same day I had an RD visit.  That hasn’t happened in a long time.  Next, believe it or not, both Dr. Z and her resident actually listened to me.  Imagine that! You know, after having been ignored for so long, it was so reassuring to hear them chatting to each other as they examined me.  "Here, can you appreciate the capsule in this MIP?  There is also a boney prominence but the capsule is definitely inflamed?  And can you feel the heat from his left hand.  It’s definitely hotter than the right, but it is very subtle."  I actually almost cried – for joy.  She also said that I had "prominent MT heads" on my right foot now, something new even from last June. And she even had an explanation for what happens with my hip – sometimes is just collapses on me while I am walking.  As I described it to her she said, "Oh yes, that’s a muscle spasm."  Like duh, didn’t anyone else tell you that? So, here’s where we stand.  The azulfidine is history.  Neither of us thought it was doing anything now.  I am having a bunch of x-rays tomorrow, and she is reviewing the new films and comparing them with the old films that I brought in.  She also wants a report from the dermatologist I am seeing next week (I have this weird rash going on my foot, just my left one).  She also mentioned that it would be nice for her to see the rash I get when I take prednisone. We will get back together on January 4th and talk about the next step. She said that she will probably recommend MTX, but wants to see what happens without the azulfidine and see the films before she decides. She did say that she doesn’t think I have RA – my presentation is too atypical.  But I could tell that she is thinking something.  She wouldn’t say what, except to say that I didn’t fit any classic profiles, but she did say that she would have a better idea by the time we next met. So I am a happy camper – a sore, hurting happy camper, but still happy. Finally – VALIDATION! Walt

Response:

Wow Walt!  It sounds like it went really well! She also wants a report from the dermatologist I am seeing next week (I have this weird rash going on my foot, just my left one).  She also mentioned that it would be nice for her to see the rash I get when I take prednisone.

Do you suppose she is thinking PA?  But whatever it is, at least she is listening to you.  I know what a relief that is!!! Char "Remember, I’m pulling for ya’.  We’re all in this together."  Red Green

Response:

Yeah, Walt!! So happy to hear your good news. Well, it’s all relative, right?;o) What I mean is, sorry about flare but so glad about the good Dr. I hope this means some real progress for you. Best wishes, Kelly;o) – Hide quoted text — Show quoted text – Well my friends, I think I just had the best RD visit ever.  Thank you Dr. Susan for suggesting Dr. Zaminsky. The first thing to go right was that I actually managed to have a little flare going on the same day I had an RD visit.  That hasn’t happened in a long time.  Next, believe it or not, both Dr. Z and her resident actually listened to me.  Imagine that! You know, after having been ignored for so long, it was so reassuring to hear them chatting to each other as they examined me.  "Here, can you appreciate the capsule in this MIP?  There is also a boney prominence but the capsule is definitely inflamed?  And can you feel the heat from his left hand.  It’s definitely hotter than the right, but it is very subtle."  I actually almost cried – for joy.  She also said that I had "prominent MT heads" on my right foot now, something new even from last June. And she even had an explanation for what happens with my hip – sometimes is just collapses on me while I am walking.  As I described it to her she said, "Oh yes, that’s a muscle spasm."  Like duh, didn’t anyone else tell you that? So, here’s where we stand.  The azulfidine is history.  Neither of us thought it was doing anything now.  I am having a bunch of x-rays tomorrow, and she is reviewing the new films and comparing them with the old films that I brought in.  She also wants a report from the dermatologist I am seeing next week (I have this weird rash going on my foot, just my left one).  She also mentioned that it would be nice for her to see the rash I get when I take prednisone. We will get back together on January 4th and talk about the next step. She said that she will probably recommend MTX, but wants to see what happens without the azulfidine and see the films before she decides. She did say that she doesn’t think I have RA – my presentation is too atypical.  But I could tell that she is thinking something.  She wouldn’t say what, except to say that I didn’t fit any classic profiles, but she did say that she would have a better idea by the time we next met. So I am a happy camper – a sore, hurting happy camper, but still happy. Finally – VALIDATION! Walt

Response:

– Hide quoted text — Show quoted text – Well my friends, I think I just had the best RD visit ever.  Thank you Dr. Susan for suggesting Dr. Zaminsky. The first thing to go right was that I actually managed to have a little flare going on the same day I had an RD visit.  That hasn’t happened in a long time.  Next, believe it or not, both Dr. Z and her resident actually listened to me.  Imagine that! You know, after having been ignored for so long, it was so reassuring to hear them chatting to each other as they examined me.  "Here, can you appreciate the capsule in this MIP?  There is also a boney prominence but the capsule is definitely inflamed?  And can you feel the heat from his left hand.  It’s definitely hotter than the right, but it is very subtle."  I actually almost cried – for joy.  She also said that I had "prominent MT heads" on my right foot now, something new even from last June. And she even had an explanation for what happens with my hip – sometimes is just collapses on me while I am walking.  As I described it to her she said, "Oh yes, that’s a muscle spasm."  Like duh, didn’t anyone else tell you that? So, here’s where we stand.  The azulfidine is history.  Neither of us thought it was doing anything now.  I am having a bunch of x-rays tomorrow, and she is reviewing the new films and comparing them with the old films that I brought in.  She also wants a report from the dermatologist I am seeing next week (I have this weird rash going on my foot, just my left one).  She also mentioned that it would be nice for her to see the rash I get when I take prednisone. We will get back together on January 4th and talk about the next step. She said that she will probably recommend MTX, but wants to see what happens without the azulfidine and see the films before she decides. She did say that she doesn’t think I have RA – my presentation is too atypical.  But I could tell that she is thinking something.  She wouldn’t say what, except to say that I didn’t fit any classic profiles, but she did say that she would have a better idea by the time we next met. So I am a happy camper – a sore, hurting happy camper, but still happy. Finally – VALIDATION! Walt

Walt, congradulations on the validation–what an early Christmas gift! God bless you,my friend.  Blessings, Donna Before you buy.

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Walt, good for you. Isnt it amazing when you find an RD that really invests in your problems. I felt exactly the same way last year when I finally found one. I am curious now what your DX will be. I know you will let us know. johnie

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 Walt writes:

  Well my friends, I think I just had the best RD visit ever.   Thank you Dr. Susan for suggesting Dr. Zaminsky.   So I am a happy camper – a sore, hurting happy camper, but still   happy.  Finally – VALIDATION!  That is certain a great Christmas gift for you Walt.  I’m glad you finally found the right doctor. … Balanced diet: Chocolate bar in left hand weighs same as one in right. ___ Blue Wave/QWK v2.12

Response:

Merry Christmas Walt! ~Krissy See my pond: http://members.aol.com/KrissyJo/ponds.html Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential.

Response:

Now that IS a great early Christmas present, Walt! Glad to hear your appt. went so well. (I just realized I sound like the other posted responses thus far) lol It’s just so uplifting to read when someone has a good experience with a new RD, and is on the road to the right diagnosis and treatment. Here’s wishing you and yours the best of luck and health for the new Year, you certainly deserve it!     Blondie — Friendship is not created by what we give, but more by what we share, it makes a whole world of things easier to bear ~ unknown

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Good for you Walt. I’m happy to hear about your positive experience. Keep us posted about your diagnosis. I am curious about this (an RA diagnosis which later turns out to be something else). Rose

Response:

Well my friends, I think I just had the best RD visit ever.  Thank you Dr. Susan for suggesting Dr. Zaminsky. The first thing to go right was that I actually managed to have a little flare going on the same day I had an RD visit.  That hasn’t happened in a long time.  Next, believe it or not, both Dr. Z and her resident actually listened to me.  Imagine that! You know, after having been ignored for so long, it was so reassuring to hear them chatting to each other as they examined me.  "Here, can you appreciate the capsule in this MIP?  There is also a boney prominence but the capsule is definitely inflamed?  And can you feel the heat from his left hand.  It’s definitely hotter than the right, but it is very subtle."  I actually almost cried – for joy.  She also said that I had "prominent MT heads" on my right foot now, something new even from last June. And she even had an explanation for what happens with my hip – sometimes is just collapses on me while I am walking.  As I described it to her she said, "Oh yes, that’s a muscle spasm."  Like duh, didn’t anyone else tell you that?   So, here’s where we stand.  The azulfidine is history.  Neither of us thought it was doing anything now.  I am having a bunch of x-rays tomorrow, and she is reviewing the new films and comparing them with the old films that I brought in.  She also wants a report from the dermatologist I am seeing next week (I have this weird rash going on my foot, just my left one).  She also mentioned that it would be nice for her to see the rash I get when I take prednisone. We will get back together on January 4th and talk about the next step. She said that she will probably recommend MTX, but wants to see what happens without the azulfidine and see the films before she decides. She did say that she doesn’t think I have RA – my presentation is too atypical.  But I could tell that she is thinking something.  She wouldn’t say what, except to say that I didn’t fit any classic profiles, but she did say that she would have a better idea by the time we next met. So I am a happy camper – a sore, hurting happy camper, but still happy. Finally – VALIDATION! Walt

Response:

Question:

Men can definitely get lupus though the incidence is only about 1/10th that of women.  I’d suppose that a man could then also pass on genes for it to his offspring.  However, you have to keep in mind that generally speaking there is very little chance of offspring inheriting lupus from ANY parent who has it. There is statistically a much higher risk for female children than male ones (10% for a daughter and 2% for a son according to Dr. Wallace in THE LUPUS BOOK), though it wouldn’t be impossible for a male child to inherit it.  Also, there is no single gene that causes lupus. It can be caused by a combination of genes and many other possible factors. Sandra

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Hi I just found out that my uncle had Lupus. Also that my brother is being monitored for it.  Elevated ANA and butterfly rash. Does anyone know if it can just get passed down on the male side of families? (and not in the females)? Just wondering because my ANA has been elevated at times and they say "it’s meaningless", not to worry. Thanks J

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