Sign in to follow this  
Followers 0
Humaira01

New to scleroderma

2 posts in this topic

Hello all,

I am new to the forum and was hoping for advice and support.

My mum was diagnosed with rheumatoid arthritis (RA) and scleroderma in September 2016. It came as a shock to us all as mum had been healthy all her life and then suddenly developed these illnesses which made her very ill, weak and house bound.

Mum has recently completed 6 sessions of cyclophosphamide after they discovered signs of early fibrosis on her lungs. The cyclo was successful and mum has now been put on mycophenolate, does anyone have any experience of taking this?

It's just really difficult at the moment. It feels like she hasn't had a pain free day since developing this disease; she is in constant pain and agony. She is also taking prednisolone 15mg until the mycophenolate kicks in but it doesn't seem to be helping at all. The last two days the inflammation has been really bad on her feet and hands and she has struggled to get out of bed. She spent the whole day in bed yesterday.

 

Will my mum ever start to feel well again? And is this a life limiting disease? So many questions I have and so much fear, none of our family or friends understand what she is going through.

Hope someone can help.

Share this post


Link to post
Share on other sites

Hi Humaira,

 

Welcome to these forums!

 

I'm sorry to hear that your mother has been suffering with scleroderma and rheumatoid arthritis and is feeling so unwell.

 

Like your mother, I also have fibrosing alveoli in my lungs and was treated with cyclophosphamide, which thankfully was very successful in my case. I've never taken mycophenolate, but am taking another immunosuppressant, azathioprine and also prednisolone. Unfortunately, scleroderma can cause painful joints and taken in conjunction with RA, it's no wonder your mother is feeling poorly. I must admit, I did start to feel much better, once I was taking the medication, so hopefully your mother will begin to see some impovement soon.

 

As scleroderma affects all sufferers differently, it's impossible to say how the disease will pan out in your mother's case. As she's already received cyclophosphamide treatment and is taking an immunosuppressant, I assume she's being treated by a listed scleroderma expert. If not, then we do recommend that course of action, as such a complex disease as scleroderma does require specialist knowledge and expertise. I would also suggest that your mother goes back to her consultant and lets him know about the amount of pain and discomfort from which she's suffering, to see whether he can advise her further about pain relief.

 

Because of the nature of scleroderma, it is very hard for anyone who has not been affected by it, to understand all it's little idiosyncrasies. At least now that you've joined our community, you can be assured of the help and support of our members.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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
Sign in to follow this  
Followers 0