Hi - Has anyone here refused prednisone and opted to continue with IVIG even though the IVIG had some pretty nasty short term side effects?
I have concerns surrounding prednisone as a course of treatment instead of continuing with IVIG. Blood Pressure, mood swings, weight gain etc, diabetes (Family History).
I’m interested in this as well. My daughter also would like to live without prednisone as it altered her personality to a huge extent. She responds without issue to her IVIG treatments and would like to continue them.
Hey guys,
Not sure if this is helpful, but I did a search to see if there are some old discussions on the topic:
http://forum.livingwithpolyneuropathy.org/search?q=prednisone
I don’t think these directly answer your question, so hopefully someone can comment on their recent experience?
CG
For myself, I’m not sure why I’m taking Prednisone, but the fact that my neuro said it can’t hurt. And so far I haven’t had any problems. (knock on wood) if you heard that it was my head. lol I now go for IVIG every four weeks and I’ve been doing pretty good.for Sleeping better, up at a reasonable hour, and fixing computer problems for other seniors who don’t want to get sucked into a $40 per hour rip-off
Hi! I’m 28 yrs old. In my experience Drs tried treating me with Metylprednisolone and prednisone at first but that only lasted for 4 weeks. It did not work for me, actually it made it worse and I couldn’t walk for a few weeks. So for me it wasn’t a choice and I had to be treated with IgG. It has helped me and I usually don’t have any side effects other than headaches sometimes. I always get an hidrocortisone and diphenhydramine IV 10 mins prior the IgG.
I initially refused Cortisone therapy with Solu-Medrol but opted for IVIg for almost 2years. When it was evident it wasn’t working at all, another neuro advised the Solu-Medrol, 1gm q wk x 4 weeks. During that therapy I could walk like never before. My “radicular” pain improved. All my IVIg ever did was cause pseudohypervolemia and an alarmimgly low sodium Na+ Level which requires ongoing restriction of fluids.
I should have tried steroids 2years ago. For me, the side effects were minimal lasting 1-2 days: flushing, slight metalic taste, mild insomnia, and touchy bowel for about a week.
For me, IVIg was way over-rated and insanely expensive. Our Country’s resourses are not vast enough to treat every eligible IVIg patient with IVIg. We’ll just go broke or start rationing the drug. Bob
I stopped taking the IVIG as it was not was not helping plus Medicare would not cover as a maintenance therapy. Next was prednisone taken orally. It really made me feel better (up real early, appetite came back walking improved) but I had to go off after I got cryptococal lung infection and had to come off prednisone as it was feediing the infection. after a year and a half of high dose of fluconozole my lungs have cleared up but I can’t go back on steroids. My CIDP_MGUS has progressed into arms and hands. But I feel like i did when I was on Steroids. The steroids were only masking the symptoms. The longterm effects don’t justify the short term relief. Only my thoughts…JDU