Chemotherapy for scleroderma

[Inamoment]

I'm on a facebook scleroderma forum, mostly american. Quite a few talk about having chemotherapy for scleroderma. I've not seen it mentioned here.

[Jen3131]

My brother in law had chemo for shogrens (sorry - can never spell that word!) because the rheumatologist could not control the intense itching that he was experiencing. I have never seen a post related to scleroderma on this forum though. It cured the itching 🤗

[Inamoment in reply to Jen3131]

That must have been terrible itching

[Jen3131 in reply to Inamoment]

It was intense - he spent a lot of time in a cold shower when it was unbearable. I have also had extreme urticaria - generally a ‘fish product’ reaction and wanted to rip my skin off. Fortunately mine was controlled by less drastic means but I can completely appreciate why he had to have chemo.

[lennyplus4]

I’ve heard both chemo & stem cell. Both seem 50/50 good/bad. Following

[trunchalobesity]

I’ve had methotrexate orally and cyclophoside by infusion monthly over 6 months and have had this for two rounds.

These are chemotherapy drugs which were used on me early on in my disease to try and control my lung disease from my scleroderma.

These drugs are aggressive and not without side effects even though I think they are given at lower doses than traditional chemo for cancer treatments. My second round of cyclophosamide meant that I no longer ovulated. I knew this may be an outcome but at the time my disease was worsening and I was in decline with three children under 5.

Stem cell transplant has also been tried here but not with successful outcome in general, although there were a minority of successes, so I believe this is not continued here now, but may be wrong.

Hope this helps.

[Inamoment]

I've heard of methotrexate i think, wasn't aware it is a chemo drug

[MFC911]

Hi,

I have had both Methotrexate and Cyclophosphamid to treat my systemic sclerosis, scleroderma & Sjourgrens. I have to say with no greatly decernable improvements. I am also on Warfarin, prednisolone and half of the pharmacy shelf content. If I include the pain killers then I am taking thirty four (34) pills a day. Of that lot the ones that I would miss the most, absolutely could not do without are: Prednisolone (steroid) Warfarin (vasodilator) Longtec (slow release oxycodone based pain killer) Hydroxychlroquine and Oxynorm liquid oxycodone.

My personal opinion is that the steroids actually do the most to "make me feel better". If I miss a dose or try to cut back on the dosage. Boy do I know it. That said the steroid dose is only 7.5mg daily so not exactly through the roof. However, it makes one heck of a difference, even missing the 2.5 mg that I usually take at night makes all the difference in the world.

Incidentally, Methotrexate is used primarily in transplant surgery to prevent organ rejection. It is classified as an immunosuppressant. I took it for three or four months a few years back, I didn't notice any effects or side effects come to that.

I hope that helps. Take care out there. Mark.