Meds to slow down scleroderma

[Kc_1411]

Which medicine or treatment works best for u to slow down the effects of scleroderma?

[dianekjs]

Hi, systemic scleroderma varies a lot from one person to the next, and meds are prescribed to best address individual risk factors and disease characteristics. Do you know which scleroderma antibody you test positive for? Which form of SSc have you been diagnosed with, diffuse or limited?

[Kc_1411 in reply to dianekjs]

Diffuse x

[dianekjs in reply to Kc_1411]

Do you know your scleroderma antibody? Different antibodies are associated with different risk factors. SCL-70 and RNA polymerase III are the most common antibodies with diffuse. You need to try to see a scleroderma specialist to determine the best treatment for your case if at all possible.

[Kc_1411 in reply to dianekjs]

Thanks it's for my husband it's hard getting anything out of him. We have an appointment this week with his specialist. I'm determined he needs to go back on medication since his stopped his physical appearance has got worse. (Feel bad as it's easy for me to say I'm not the one going through it)

Just trying to get an idea of what works best

Will most probably have to wait to see a specialist x

[Jontee180]

I've been on quite a few treatments for systemic sclerosis but nothing has worked been on rituximab twice but no effect am back on sirilimus again but no effect yet .the scleroderma is effecting my lung restrictions bad and collogen has got hard in legs now get really breathless at slightest energy

[Kc_1411]

Very sorry to hear this. I know there are many trials in America I'm hoping to speak to a consultant this week and discuss further treatments out there will let u know if any thing positive comes out of it x

[Kc_1411]

Hey guys so saw my husbands consultant today out come was to stick with sidenifil and iloprost treatment after lung and heart test may try another med (can't remember the name sorry something starting with F)

Was a positive meet though got referred for dental treatment and a dietitian.

In terms of the treatment for stem cell transplant it's not suitable. I also mentioned the stem cell injections into the hands they are still at the trail stage.

Thanks for all advice guys x

[Hidden in reply to Kc_1411]

Has he tried Mycophenolate yet? This immunesuppressant is often used to slow the down the disease process in a number of rheumatic diseases - including Scleroderma. I take it for Sjögren’s - which it is a more unusual choice of med for.

[Kc_1411 in reply to Hidden]

No he hasn't thank you I will mention this in his next app x