ivig for MMN, how to avoid side effects?

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bryanmarley

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05/2004
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fl
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sebring
Hi,
I have had MMN for 6 years and been getting ivig the entire time. I react to the ivig and get flu like symptoms for 3-5 days following my 2 days of infusions every 5 weeks. Has anyone found anything that can be done to reduce or eliminate these side effects? I used to take Octagam but switched to Gammunex. The volume of Gammunex is much less (more concentrate) and the side effects are less with Gammunex. I welcome any suggestions, thanks.
Bryan
 
Hi Bryan

My husband George was treated for one year prior to diagnosis of ALS and experienced chills during the treatments and sometimes flushing, low fever. But his worst side effect was the stinking itchy rash all over his ankles and legs. Caused very dry skin in those areas.

IVIG did not work for George as his was not MMN. Sure wish it were MMN for him.
Best wishes during your treatments and hopefully the nurse will find a plan so you will not have the flu like symtoms.

Also Bryan, George passed away from a fall not due to his ALS.

Keep up your good spirit and live each day to the fullest.

God bless you

Patty :)
 
Patty, thanks for your encouraging words, take care.
Bryan
 
Bryan my husband has been on IVIG since 2007 for CIDP. He used to have the same pre and post side effects. He used to take a Benadryl and Naprosyn an hour before treatment which helped considerably. But he has found over the long term that he starts drinking lots of water 2 days before treatment, carries on with lots of water during the treatment, and will drink lots of water after the treatment. IVIG is very thick stuff and the water makes all the difference. If he remembers to drink, drink, drink, he rarely has the headaches or flu like symptoms. Also the flow rate of the IVIG seems critical for some people. He gets his run through quite fast and tolerates that, but many in the day care where he gets treatment have to have a very slow flow rate or else they don't tolerate the IVIG without getting major side effects. Best of luck.
Laurel
 
Bryan. I had it daily, weekly then fortnightly over 7 months. Laurel is right the flow rate is fairly critical. I had it over 3 hours and luckily was able to go straight back to work. Plenty of fluids, paracetemol pre infusion , then 4 hourly for 24 hours is helpful.
I developed cutaneous lupus unfortunately, very nasty rash. It went as soon as infusions ceased, and they were not doing anything anyway. Now have a ? PLS diagnosis
Aly
 
Hi Bryan,

You asked this question under another thread also. Hear is part of my answer that I wrote on that thread.

Hi Bryan,

The first time I recieved IVIG, Jan, 2007, I had flu like symptoms for about 5 days. They gave me some prescriptions that took care of that and since then I have recieved the following pre meds:

Salumedral (sp?) = IV of prednisone, 2 Benadryl, 2 Tylenol, and one compozine. The compozine is a for nausea and headache. It is all wonderful and I have never had a side effect from IVIG since. I am a little hyper from the prednisone and my face is a little red the next day only. These work perfect for me.

I forgot about the speed at which the IVIG is given. It takes at least 5 hours for me and I sleep during most of it and usually after. I am retired and disabled from MMN. I also get gamex (sp?) as my IVIG.

Let us know how it goes. Peg
 
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