Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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Muscles & Bones
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IVIG and after affects

brendacaytonwhite
brendacaytonwhite
Hello everyone. I hope today, Sat is bright and beautiful for you all. In Tampa, where I live it is so beautiful outside and all I want to do is go outside, wlak around and take it all in. That is such a simple matter until I try to do it. I came home last night after my third day of IVIG treatment, where I had taken a 5 day treatment in 3 days. I didn't want to need to take 2 more nonpaid days off work, so the nurse was able to give me more of the treatment over the last 2 days. I noticed on the 2nd day that I was feeling weaker but after the 3rd day I started to feel as if I have the flu and really bad. I am very weak and can barely walk or even stand up, which my daughter credits to the amount of walking I did yesterday while shopping with my grandson, but it didn't seem as I walked anymore than I normally do on the weekend while doing my errands. I used the motorized scooter at one store and pushed or what I considered let the cart hold me up at the other store. I ate before bed and took my meds. I didn't even watch TV as long as I normally do, but woke this morning barely able to get out of hte bed and my bowels which normally take me 3 to 4 days to empty and they have emptied out twice within 12 hours. I can barely stand this morning and I am more naueous than before the treatment. What are the normal side affects that anyone has had after an IVIG treatment? Is there a reason why taking the treatments in a shorter timeframe worst than spreading them out over 5 days? My brain can't comprehend why this is happening and I need to get better before Monday.
deleted_user
deleted_user
Especially for the first IVIG treatment it takes a few days to recover. the body is responding to having other peoples immune system inserted into you. The flu like feeling is very common. When you have the flu your own body makes tons of immune factor, and now they gave that to you IV. I did 3 days initially and now do just 2 but it takes me a few days to recover. the slower it is given the better it is for recovery. I did better after my second treatment and then had a few without much after symptoms, just tired. Now i seem to be allergic to the chemicals they use to clean the IG and i suffer a bit more. Still tolerable. Tylenol helps me alot. Good luck Brenda, give it more time...
autumm
autumm
Hi Brenda. Never did this treatment and I am not a trained nurse like Shawna. I am sorry this is so hard for you. Shawna has given good advice as she is walking your journey too. Thinking of you and wishing you well. Autumm
deleted_user
deleted_user
I found that going slower is much better than going fast. I have it done in two days though. It takes about 5 hours each day. I get the flu-like feelings and I find that hydration helps some, but a nap is best. It gets easier as time goes by.
trpt1
trpt1
How do you know when you must have Ivig? Does the blood test indicate severe anemia? What makes the doctor choose Ivig or rituxan?

Brenda, I hope the treatments will help to bring you strength and less pain. I wish you well and speedy recovery.
deleted_user
deleted_user
I had horrible flulike symptoms and a debilitating headache for 3 days after IVIG treatment. This was only after my infusions were sort of rushed in. When each bottle was given over 12 hours, I was totally fine. The quickest infusion was a bottle over 5 hours and it was awful. The headache itself was so bad that even if I changed positions slightly, it would cause my ears to ring, everything to go black, and it hurt so bad I would start screaming and thrashing around in the bed for nearly 90 seconds until it stopped. And this was every time I changed positions. All I wanted to do was sleep. I also had really bad nosebleeds for about 2 weeks after that infusion also.
deleted_user
deleted_user
Hi ,I had the most severe reaction on my second lot ( cardiac arrest) I was really unwell after first lot and needed antihistamine shots ,then the second infusion went up-- well ,it's no longer an option for me to have these my kidneys played up too.I hope you have more tolerance to the IVIG and get well!
brendacaytonwhite
brendacaytonwhite
Everyone please forgive me for taking so long to reply to everyone. I have been miserable ever since my last IVIG. I took 5 days worth of treatment over a 3 day period because I didn't want to take the next 2 days off work with no pay. I have been going down hill ever since. My neurologist who is giving me the IVIg had no idea why I am feeling faint, nauseatic and barely able to walk. But he did tell me that I cannot stop the IVIG and to take the next one in a month. Such a lack of compassion and I received a 2nd survey on him. I wonder why. He can't fiqure out why I can't remember anything and am confused all the time. I go to see my rheumatologist tomorrow to start the Acthar with the hope that it will replace the Prednisone, but if it doesn't my diabetes nurse has asked him to increase my prednisone so that I can function better which I did prior to the tapering and she will monitor my glucose and make sure that I take enough insulin. She actually called him while I was in the office with her. I am asking for your continued prayer that I will finally find what I need. I have hopes and dreams. I have seen jobs listed that I want to apply for. I can tell that my current employer is not doing as well as expected and I do not want to be on the layoff end because what I do can be outsourced for less. I know in my heart that I can do something more fulfiling if I can improve my mind.