Reply To: cellcept/ cyclosporin/immunosuppressants questions

Lori, to answer your questions- I am still on ivig but am in process of weaning down slowly- I see a neurologist at mayo clinic who recommended a wean over a year or two so currently I am on every 10 days from every 7 days – it has helped with the relapses – it has been one year since my last relapse whereas before imuran even on weekly ivig , I was still having relapses some requiring hospitalization. In terms of cellcept, I had severe abdominal pain, nausea, felt shaky and “wired” all the time and had terrible insomnia I lasted 3 weeks to see if side effects would go away but I just could not tolerate it- many people do very well on it however so don’t let my experience scare you off. I take imuran in a pill form I take a relatively low dose once daily. I do have to get bloodwork every month while on it to check blood counts and liver function- I have a port so they draw it when I am in for my IVIG treatments. I found that if you go on Lupus or Rheumatoid arthritis or Chrons disease info sites or forums you find lots of info on these meds as they are used routinely for those autoimmune conditions –
I too keep my eye on the stem cell transplant and If I got worse I would certainly consider but the neurologist at the Mayo gave me a great quote that I often think about when considering treatments ” The punishment must fit the crime” So true! Please don’t hesitate with any questions for me if I can help.