Kamlesh

How to recognize Scleroderma in remission?

5 posts in this topic

I am off Cellcept for over six months now My PFT and CT scan taken couple of weeks ago showed no changes in last one year.

 

Should I assume my Scleroderma is in remission?

How lasting Scleroderma are?

What are chances of flare-ups?

 

I owe a lot to this meeting.

Thanks my friends.

 

Now Scleroderma and Diabetes under control and more work required for GERD, Depression, and Sleep disorder.


Kind regards,

 

Kamlesh

 

 

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Considering the problems you have had, Kamlesh, this sounds like very good news to me. Flares are unpredictable. I can't answer your other questions, but I wanted to respond to your good news. I wish you the same good results on your other issues.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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I don't know anything about remissions. It's sounds great! Have a good day!

Nan

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Hello Kamlesh,

As always it is best to check with your particular doctor, but I asked mine about this very question. He said that sclero, unlike lupus, doesn't have a ''remission" per se. He said lupus has ups and downs where sclero tends to get worse and worse but eventually 'burns itself out' as he put it. The disease doesn't stop, it just isn't as active. After three years of steady decline mine seems to have reached some kind of plateau, or at least not getting so bad so fast. I swear my skin even feels softer! My doctor tends to gauge my progress or regression based on my level of inflammation. I can usually tell when it's in a bad period because the itching is awful, the skin on the inside of my elbows is red and feels hot to the touch, like I have a fever, and of course extra fatigue, muscle weakness, joint pain, blah blah blah. Of course any damage already done cannot be undone. My big issue right now is losing muscle which is either from the inflammation or the fibrosis. We are in the process of trying to wean me from the steroids (which put me into diabetes as well) to make that determination.

I am not taking any immunosuppressants anymore. Nothing did me any good and only made me feel worse. Now that I am feeling better than I have in a long while, I'm going to take a shot at going back to work next month. I'm nervous about it but don't have anything to lose.

This is a stinky disease, and I too am so glad I found people who actually understand what our life is like. Although I have attended a few symposia and meetings, I have never actually met another diffuse patient in real life. So having people to talk to really does help! Lots of luck and I hope you never have another symptom ever again! Love, Mary


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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Kamlesh-

 

There is a light at the end of the tunnel! Good speed on your good news!

 

Linda :)


Tru

 

It is what it is...........

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