Jump to content
Sclero Forums

Is pain causing damage?

Recommended Posts

Hi everyone!


I have scleroderma/polymyositis overlap.


I have been slowly reducing my Prednisolone for the past year and increasing the Azathioprine to compensate. This is about the third time I have tried to come off steroids and I am now down to 1mg and will be completely off it in a week - :D Hurrah!!!


The thing is, I am now experiencing pain in my elbows, hips, feet and fingers. It's bad but not unbearable and I can live with it if it means coming off steroids.


However, is this doing any long term damage to my joints/muscles? I'm never completely sure whether I'm feeling the pain of scleroderma or myositis! I think the fingers are scleroderma but the arms and hips might be the myositis.


If I'm not doing any damage I'll live with the pain but I don't want to be silly about it if it means I do damage that can never be put right ;)


Warm Huggles



Share this post

Link to post
Share on other sites

Hi Hapi,


You need to be notifying your doctor about this pain. It might be okay but it also might be a sign of inflammation. They might just lower the steroids a little more slowly or otherwise adjust your treatment plan. Please let us know what you find out from the doctor!

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


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

Share this post

Link to post
Share on other sites

Yes I agree wit Shelley on this one.Good lUck Hapi and let us know what the doctor say's.


My mom took predisone for her shingles and it helped with her pain she was having in her legs once she got off the pain came back with a vengence. She is going to have surgery on her knees, hopefully that will help her. She is only 67 and walks like an 80 somethig would.


Take care Hapi, hugs, Sam


Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now