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Update On Sub Q Ivig Treatment


MNsue
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Hello everyone,

It has been a while since I posted, but I wanted to share a treatment that has been working well for my autoimmune mediated neuropathy and POTS.

I spent the last two years working with an immunologist trying to stabilize my POTS and neuropathy. I started with high dose prednisone, moved on to IVIG once a month, then IVIG once every other week due to adverse side effects. The IVIG worked, however I was getting quite ill from the large dose. In January I moved to the sub cutaneous form of IVIG called vivaglobin. I give myself an injection 5 times a week. I seem to be more stable and the side effects are much better.

I saw my neurologist today, and he said that he would not have recognized me due to the vast improvement in my symptoms. My POTS is much more controlled. I still need to take florinif and midodrine from time to time, but I am not dependent on it.

The only autoimmune marker I had was a very high thyroid antibody count, so I was not a clear case of autoimmune neuropathy. I am so thankful for that my immunologist did not give up on me.

I hope this is helpful to others.

Rhonda

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Interesting. Glad you are getting some help.

Back in 1991, there were article in the CFIDS CHronicle about gamma globulin helping pts and that was my dx back then. My CFS doc gave me shots and finally let me give my own in the muscle but it was first once a month then a few times a month...it seemed I developed a tolerance but never any side effects but I don't remember the dose. Then the Gulf War started and all supplies vanished from Pharmacies and I could no longer get it.

I still get the huge needles for my B12 shots (22gauge as gamma was thick stuff ) thinking I may try the gamma again. I forget the specificities of why or what it helped way back then but it's interesting to read somebody is using it.

Good luck.

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Sophia,

Way back when, I was seeing an Immunologist who treated CFS; I was not diagnosed with POTS yet. CFS patients often showed "hyper"immune activity, but also areas of deficiencies. I was one of them and he said it qualified me for gamma globulin injections. Unfortunately, I had a severe reaction to it, unlike before I became ill, and had two shots without any difficulty for being exposed to a contagious patient. That is why this Immunologist prescribed it maybe just for preventative measures or in hopes of helping the flu-like symptoms possibly due to low immunity?

So long ago too!

Patricia

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The theory behind the IVIG for patients like me is to have my over active antibodies attach to the new antibodies. They believe that there may be regulator antibodies in the IVIG that help keep my immune system working properly.

I was also diagnosed with CFS prior to being diagnosed with POTS and Neuropathy. It has been ill for over 17 years. I am so thankful the new information they have on the immune system. I think they are making more and more breakthroughs. .

I hope this helps explain why they tried the treatment.

Rhonda

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