posted
My daughter who has been sick for 8 years has just been approved for IVIG, she has had 4 picc lines and been on almost every med possible and sometimes she feels ok for awhile then it all comes back. Two years ago Dr J said he believed she needed it sent us to an immunologist, he said her immune system was shot and needed IVIG, insurance denied us, we took her to a neurologist who diagnosed her with polyradiculitis and polyneuropathy and said she need IVIG, Has anyone here had IVIG, has it helped, what was the side effects, how did you ease your side effects, anything positive or negative????
Posts: 200 | From Massachusetts | Registered: Apr 2007
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posted
Hi, My dd has had 6 high dose IVIG. (1.5g/kg) She has chronic lyme, bartonella, and an autoimmune disorder called PANDAS, likely as a result of the untreated Lyme/Bart.
Our doctor is great about pre-medicating her to avoid the migraines that can happen as a result of IVIG. She has very few side effects. An occasional migraine but we usually nip it in the bud and its gone pretty quickly.
This is what we do. The morning of the first day (she has it on 2 consecutive days and they drip it s.l.o.w.l.y. which helps) -takes 5-6 hours, she take 400mg Advil, and 50mg of Benedryl. At noon she takes 40mg prednisone. (I know its contraindicted in Lyme but both Dr. J and Dr. B say its ok for a few days during and after IVIG....I give her as little as possible if she's doing okay but I sort of know how much she needs now)
The biggie is that she drinks a LOT. As much as she can stand. AND she gets a bag (sometimes 2) of fluids at the same time as the IVIG drip.
She repeats the Advil/Benedryl two times on the day of the IVIG. (so total of 3 times, 6 hours apart) She repeats the Prednisone usually for 3 days, but we have done as many as 6 days at times.
The side effects from the IVIG can happen any day for about a week. Be sure to have her drink lots of fluids for the whole week. It really helps. If a head ache begins to come on, hit the advil immediately. If it doesn't work, you can get a prescription for head ache medicine. (good to have on hand, but makes them very sleepy) Sometimes I don't give the Prednisone until she thinks she may give a head ache and if I give it right off, it goes right away.
IVIG has been wonderful for my dd. Even before we knew she had Lyme it helped with her autoimmune disorder. Will you see a doctor in Darien, CT for the IVIG? If so, we'll be there on July 6 and 7.
If you have anymore questions, please feel free to write to me at [email protected]Posts: 41 | From Somewhere over the rainbow | Registered: Apr 2011
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I think most insurance companies have documents called 'coverage positions' which detail exactly what is covered and for which conditions.
Our company, for example, will cover IVIG for CIDP chronic inflammatory demylelinating polyneuropathy (with certain diagnostic requirements, like certain EMG results and Ig levels), but not for Chronic fatigue, per their document.
Maybe you can ask your insurance company if you can have a copy of that document. I found the ones from Cigna online actually.
racer
-------------------- Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+) Posts: 133 | From CT | Registered: Feb 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Yes, you need to see a top LL neuro or immunologist to get the proper tests to qualify for IVIG. Did you go to the LL neuro in CT? If so, that's good.
momaine gave a good run down of side-effects, etc. Except that personally I wouldn't recommend steroids, unless it's really necessary in your case. A LL dr would call the shots on that one.
It's worth it. It takes time to see results, and has to be done with other treatment, too, as necessary, but can help a lot.
Posts: 3792 | From around | Registered: Mar 2008
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Just to clarify, if you can go without the steroids, I too would recommend that. We did it before we knew lyme was involved and continued after knowing about Lyme only because the alternative was pretty bad for my dd. We do use as few as possible. The migaine that she gets can be debilitating at times. The steroids do help prevent it. She also stays on all her antibiotics while getting the steroids.
Posts: 41 | From Somewhere over the rainbow | Registered: Apr 2011
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