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Ivig Update

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Hello everyone.

I thought I would post a little information regarding my experience with IVIG. Yesterday was my 3rd month of IVIG. The first month I started with two days of treatment (60 grams each day). I had a headache and fever for the first two week, however most of my symptoms went away for about two weeks. (weakness and POTS)

The 2nd month I was put on a different brand (Gammunex) and took 60 grams. I waited 5 weeks for the 2nd treatment, so my neurological symptoms and POTS returned in week 4. I had a fever and headache for about 4 days after the treatment. I meet with my immunologist and he changed my product to Gammagard liquid. I met with my physical therapist two weeks after this treatment and my left leg was at 100% strength for the first time in over a year. My POTS did not go away like it did the last time, but it was manageable.

Yesterday I took my 3rd treatment. The headache has been minor, so I am hopeful that the Gammagard will do the trick. He said that gammagard is the same consistency as blood, so it does not mess with the pressures in your body as much. It seems to be a better product for patients with dysautonomia. It still takes me about 6 hours to do the IV. We hope to speed things up as the side effects are less.

I was also told that the side effects seem to go away with time.

I thought this may be helpful to others seeking IVIG treatment.


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IVIG = intravenous immunoglobulin

in short, it is used in situations of immune deficiency (in smaller doses) & in autoimmune conditions (in larger doses). IVIG is a blood product.

under the theory that, for some, autonomic dysfunction is an autoimmune process, it is starting to be used in some more severe cases of autonomic neuropathy that is thought to be autoimmune in origin. it is not used for headaches but rather headaches are one of the most common side effects while receiving the treatments, especially in higher doses.

it is a VERY expensive treatment but intended to treat the root of the problem rather than symptoms.

i had the treatments just under a year ago and wrote about the whys, hows, my experiences, etc extensively throughout the process. if you do a search with my name & "IVIG" you'll find a lot more details about the treatment, the theories behind it, pros/cons, etc.

my treatments were 8hrs/day for five days in a row on a monthly basis. we had planned on six months but only made it through two before my liver rejected the treatments. my first cycle of the treatment had to be done inpatient in the hospital; following that it was via home nursing.

hope this helps clarify,

:blink: melissa

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I am on IVIG because I have a progressive neuropathy that has attacked the peripheral nerves in my eyes, face, left arm and left leg. We believe the same neuropathy is causing the POTS.

My immunologist explained a study showing animals raised in sterile environments produce antibodies. They believe that these are immune regulating antibodies. Scientist are starting to think that when patients are given large doses of IVIG, the immune regulating antibodies in the IVIG take over for the dysfunctional antibodies of the patient. I will also for a copy of the study next time. I thought others may be interested.

The treatment side effects are headache and fever that can last from a few days to a couple of weeks. It is not much fun, but it is keeping me walking.

I hope this clarifies things. Thanks Melissa for your explanation.


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