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Is My Relapse all that Rare?


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#1 fragiledancer2

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Posted 29 January 2012 - 04:02 PM

Hi! I have had Diffuse for 12 years now and was put on Cellcept originally. Things started slowing down after a few years. If I go off the usually 1 gram of Cellcept I get some retightening. But a couple of months ago I began tightening very quickly and severely, and my Rodnan score is about what it was in 2000. My rheumatologist who is a specialist told me relapse is rare after all these years. I did have an MRA a couple of months ago where Gadolinium was used-but my kidneys are fine so there is not supposed to be any deposit of metal in the body. I am now on 2 grams of Cellcept-was on 1 which usually suppresses things. Then to 3 grams and then Rituxamib if there is no slowing. I would appreciate any responses from people with a similar experience.

#2 Shelley Ensz

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Posted 30 January 2012 - 05:50 PM

Hi Fragiledancer,

I'm sorry that your skin is tightening again. Unfortunately there are no "rules" when it comes to how scleroderma develops or changes in any given individual. As you've already experienced, it can get worse, and then it can get better, so hopefully you will find something soon to settle it down, or the illness will decide on its own that it is naptime again.

I will send some more hugs, and they are guaranteed to not cause any skin tightening!

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Sweet

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Posted 01 February 2012 - 10:23 AM

Hi, I don't have any experience with this, but I wanted to send my positive thoughts to you. I can imagine, it has to be very frustrating, and a bit scary. Please know my heart is with you.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Amanda Thorpe

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Posted 06 February 2012 - 11:21 AM

Hello Fragiledancer

That can't be easy and I am so sorry. There are no rules and you are the person I refer to when explaining that the "3-5 year active period then plateau" rule isn't always the way it goes. Here you are proving the point again!

I hope that things now slow down for you, please let us know.

Take care.
Amanda Thorpe
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International Scleroderma Network (ISN)