HiI was diagnosed with diffuse Scleroderma in 2015
I was on mycophenolate for nearly 5years however it caused alot of repeat infections and prevented healing with my ulcers I decided to come off
My rheumatologist has been urging me to go back onto a immunosuppressent drug and has suggested myphoric
Has anyone else had experience with this drug? Have you found it has helped with symptoms or gave symptoms progressed even though you've been on it.
Many thanks in advance
Una
Hi UG2025I was initially put on mycophenalate and within 2 months it caused bleeding in my stomach & led to serious anemia, while at the same time all Scleroderma symptoms were still progessing regardless. I asked my Rheumatologist for an alternative so they decided on intravenous Entoxan for 6 months (one session a month), this fortunately halted the disease it went into remission. This was then followed by another 6 months of Immunoglobulin intravenously, once a month, due to inflammation in my muscles.
Hi George Thanks for answering
That's really interesting, whilst my side affects from mycophenolate weren't as severe it's interesting that your noticed progression while being on the immunosuppressive medication..
I have never heard of that intravenous infusion before.. I'll definitely check that out, I'd prefer to get infusions than struggle with tablets and bloods (having to get regular bloods with terrible veins is stressful)
Glad your well, do you live in UK?
Hi UG2025
I guess in my case symptoms were progressing rapidly. Yes veins are a terrible problem isn't it ? Last time they pricked me with those needles at least 14 times before finding a suitable vein, i almost gave up and asked the doctor to "let" me go home. I'm australian but live in greece with my wife.
Lets cheer up and face this mad sickness with courage, always try to keep happy!!
By the way with the intravenous chemo's everything always went well, i never had any side effects at all.
Oh Yes absolutely, i may have Scleroderma but it's never took over my life.. I won't let it (too stuborn)I'm from Ireland.. I actually have received cyclophosomide infusions 6 months, they were brilliant for me, but I've never received again
I get flolan to treat raynauds
Ninetibnab for lung disease
And they're trying to put me on myfortic but I'm not interested.. its immunosuppressive.. I'd rather let disease take its course as they cause me too may infections etc..
Good luck..take care and speak again no doubt haha
Una
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