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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 sadie20

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Posted 25 December 2006 - 07:42 AM

Happy Holidays/Happy Holidays to everyone! I have been on Cellcept now for about 6 weeks with no improvement and sometimes I believe it may be getting worse. I know they tell us it may take up to 6 months, but it seems ridiculous to me. I am so afraid my condition will worsen while wating for the six month mark..it also seems like if it is going to work, I should see some kind of sign. Also, I'm led to believe if this doesn't work ther is nothing else?? I started on Imuran which REALLY worked well, but after about 8 weeks, I developed pancreatitis. Please share any experience in this area..Thanks all
Gwen

#2 Guest_Jennifer_*

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Posted 25 December 2006 - 02:04 PM

Sadie,
I am sorry you are feeling discouraged. I take Cellcept but mine's soley for my lungs and it sounds like yours is more for skin, am I right? I was also told it can take several months to begin. What dose are you on, and have you talked to your Dr. about the anxiety you are having? I know some of us are taking up to 3 grams of Cellcept a day. I wish I had more answers for you, but CellCept is all I've tried. I've been on it for over a year now. I feel better since I have been taking it, although tests say a different story. I wish you the best.
Jennifer

#3 whirlway

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Posted 25 December 2006 - 05:13 PM

Sadie, I have been on cellcept for several years now. I also was on imuran, but had liver involvement, so that is when I went on cellcept. I take 2000mg daily and have not had any problems so far. However, my dr does have a plan if I start have problems withcc. I can't remember the name of the drug, but he did say there were some new ones out there. I know Sweet has been having some difficulty w/ our dr, (we have the same one) but so far so good withme.
What kind of problems are you having anyway? You can always send me a private email if you want.
I wish you the best of luck.
~whirlway


#4 LoriNC

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Posted 25 December 2006 - 09:00 PM

Gwen,

I understand your concern that your condition may worsen while you wait for the drug to take effect, I felt exactly the same way. I tried really hard not to focus on it(ha ! Ha!), at least daily I figure out how long I had been on cellcept. No real advice here, other than I was able to take that daily concern and turn it into a time of personal meditation.....

Initially I was put on cellcept to try to stop or slow the aggresive progression of my sclero. I developed mild lung in involvement two months into the drug and 7 months later my lungs have stabilized with no scar tissue and minimal inflammation. Recently I think there has been some reversal of the skin involvement, but it has a really long way to go and am unsure if it really is working.

Evert case is different....Earlier in the month I saw my rheumatologist and asked if I should change from cellcept, and if so what drugs would be next. She did not want to change, but indicated there are other options whcih may include oral ot IV cytoxan.

I hope the cellcept begins to wok its magic soon and with good results!

Lori

#5 emmie

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Posted 26 December 2006 - 07:35 PM

Hi Gwen,

I've been on cellcept for 18 months now. It has stabilized my lung disease: remains mild--hooray. I have seen definited improvement in the skin involvement.

I didn't notice the skin immediately. It was very gradual. I want to say it was about a year before I noticed how much better my hands looked. They aren't beautiful, but they are no longer hard!!!

Even tho the skin is nice for vanity reasons, I'm most happy about the lungs even tho I can't see that! I hope you have some benefit soon.

xoxo emmie

#6 sadie20

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Posted 27 December 2006 - 08:56 AM

Thanks Emmie, Lori, Jennifer for all of your comments. I was originally diagnosed in mid Oct 06with localized sclero. After drawing some additional labs, my rheumatologist called 2 days later with the news that I had systemic. I sustained a spider bite at beginning of Aug..R arm swelling and reddness..treated with multiple antibiotics & received a secondary bowel infection for which I'll need to take Vanc for a year. Anyway, my rheumatologist asked her partner to look at my arm on a routine visit & he immediately dignosed it as sclero(had a definite friction rub which is supposedly diagnostic) Anyway, I now believe I've had sclero for at least 4 years..watermelon stomach, skin discoloration, raynauds, increasing muscle weakness etc. Anyway, I guess I'm so concerned because I'm losing strength/flexibility in my dominant hand. I'm a nurse and have already been told I should never work in a hospital setting(ER/ICU) again due to the immunosuppressive drugs. I am now getting ready to try to find a less physically stressful job although my Dr. is pushing toward disability. I am scheduled to have a cath on Fri to check for pulm hypertension. I guess as a nurse it is so hard to understand why it would take MONTHS to see if a med is going to work. This disease is so frightening on a daily basis. I will say that this experience has really increased my gratitude and spirituality. My friends and family will say things like..."So what is going to happen to you?" All I can say is "Who Knows?" Most other diseases have such a pedictable course, bit the AI diseases are tricky.. Thanks for all the support.