side effects

barbaras · 03-31-2009, 01:34 AM

I have written before about my daughter Belinda. She has been on her treatment for six months now. She is experiencing shortness of breath quite often. Also, she breaks out in a rash and gets quite itchy. She takes a ventolin inhaler when she has the shortness of breath. Has had an exray of her lungs. That is all clear. Had a blood test done for liver and kidneys ect. Waiting on results. Is anybody else experiencing these problems while having treatment. She is quite scared. Any response would be appreciated Thankyou Barb.

laurel · 03-31-2009, 12:05 PM

Hi Barb,
My husband has taken 110G of IVIG montly for about 18 months for CIDP--MADSAM. He has a very multi focal presentation without much in the way of sensory symptoms so MMN has been a query for him too. But right now he is MADSAM. Most people who take IVIG pre-medicate with Benadryl to avoid the rash and itchiness. And there are some who actually get some steroids along with their IVIG due to the rashes and skin problems. My husband has actually had the shortness of breath for many months too with no answers. His is primarily on minor exertion. And he gets profuse sweating too. So I am thinking he has some autonomic issues happening. Hopefully your daughter's liver and kidney function will be fine. Hubby had that checked and has it done every 3 months. His was fine so he just puts up with the shortness of breath. He doesn't get the rashes so he is lucky. But he gets the killer post IVIG headaches and Naprosyn seems to work better than Tylenol or Ibuprofen.
Laurel

Peg B · 03-31-2009, 08:53 PM

HI,

I never got a rash but did get severe flu symptoms that are the typical, side effects, the first time I had IVIG. I have MMN. After 2 years of differential DX of ALS or MMN. Doc is sure it is MMN. My premeds do exist of benedryl and predisone (IV form -solumendral) and tylenol. In addition for the prevention of headache which I had for a week after the first treatment (and I have had maybe 8 headaches in 60 years except during my second preganacy), I get prescription composine.

All the extra meds come with my IVIG treatment, which I get at home, except for the compozine which I have a prescription for and get about one script per year as I only take it prior to treatments every 3 weeks. These meds take care of the side effects completely. I am a little red faced the day after, which for me is tomorrow, and I am a little hyper from the steroid, which is of course a nice change. Sorry for too much information, and now that I said that, I am sure it is the prednisone talking.

Best Wishes, Peg

barbaras · 04-01-2009, 12:52 AM

thankyou laurel and Peg for your answers. It helps to talk to other people with this problem. I will make sure that she has a pre-med before treatment. She is seeing another specialist soon who has more dealings with mmn. Thankyou so much. xxx