IVIG

[jamie0410]

Hi to you all! I was just curious if any of you have been prescribed or are being treated with IVIG for Hyper POTS?

I have some confusion about if this is a typical treatment and how it could help.

Any advice would be appreciated!

Thanks

[bombsh3ll]

I do not believe it is currently considered a standard treatment unless you have been diagnosed with an autoimmune disease, however research is increasingly focusing on an autoimmune basis for POTS, with a number of antibodies being implicated in at least some cases.

Although I personally have reason to suspect a structural cause in my own case & have no features suggestive of autoimmune disease, I would still give IVIG a try myself if it were offered, as some patients have really benefited & at this stage the science isn't at the point of being able to predict in advance which patients will or won't

Has your specialist suggested it & if so did they indicate why in your particular case?

B xxx

[jamie0410]

Hi @bombsh3ll

I appreciate your response! I have had about 10 courses of IVIG as I was diagnosed with Myasthenia Gravis in 2014 (misdiagnosis I actually have MS) It was very helpful and helped me a lot. Unfortunately it would only last for about 2 wks and each infusion was about 12 hours so it was difficult to keep up.

My POTS specialist just recommended it to me but was not very specific as to why. He did mention that since I tolerated it previously and found it helpful it might be worth trying.
That’s Interesting what you mentioned about the autoimmune question. I have MS and an autoimmune blood clotting disorder and I know they tend to run together

thank you so much I appreciate your help!

 

[toomanyproblems]

I get 60g of IVIg over two days every three weeks. I've been getting it off and on for two years but continuously since January of this year. I'm not getting it specifically for POTS but it helps some of my symptoms. My HR still goes up like it did but I'm not as dizzy. It's also helped some of my other autonomic nervous system problems like gastroparesis. I have a lot of autoimmune diseases so it's probably related. It's hard to get it covered by insurance for anything anymore. But if you can it can be worth it.

[CallieAndToby]

I was diagnosed with autoimmune encephalitis and treated with ivig for 6 months. The only thing it helped was my POTS. It's very hard to get approved because it's so expensive but I wish I could try it again. Will be asking my new neurologist. 

[p8d]

I do subcutaneous IG weekly at home.  No sitting for hours in an infusion center, no bad side effects.  I have autoimmune disease and my Celltrend results show one positive.  My neuro and cardiologist both are positive my dys is autoimmune.  It helps lots of things but not yet my BP or HR very much.  I credit it with my improving condition overall but I am still very limited.  Having said that I would be loathe to stop it.  

[Clb75]

Hi, I unfortunately have had the opposite experience with IVIG. I have been on it for 7 years for another autoimmune disease, which it really helps. However, I developed POTS 2 years after I started IVIG and it hasn’t done anything to help my symptoms. I think it’s really case specific. It’s always worth a shot though if your doctor can get it approved.