Sep 25, 2012

Autoimmune basis for POTS - new research from Mayo Clinic!

New research out of Mayo Clinic shows autoimmunity in POTS patients:

Autoimmunoreactive IgGs from patients with postural orthostatic tachycardia syndrome.

Mayo Clinic has hinted in several of its prior POTS related publications that POTS may have an autoimmune basis.  I believe this is the first study that directly investigated this subject.  This is very exciting news.

As a patient advocate, I have spoken with literally thousands of POTS patients about their symptoms.  While I'm not a doctor, I have noticed that the vast majority of them have autoimmune tendencies.  I have POTS as the result of a confirmed autoimmune disease.  I know many, many other POTS patients who have confirmed autoimmune diseases too - Sjogren's, Lupus, Rheumatoid Arthritis, Scleroderma, Celiac, Hashimoto's Thyroiditis, Myasthenia Gravis and more.

When I hear patients describing frequent rashes, skin changes, Raynaud's, symptoms of small fiber neuropathy, sensitivities to gluten, or a family history of other autoimmune conditions, that sets of alarm bells in my head.  THIS PERSON PROBABLY HAS AN UNDIAGNOSED AUTOIMMUNE DISEASE!  Of course, telling a fellow patient that doesn't really help them, and it could scare them for no reason, since I can't know for sure.  I usually encourage them to see a good neurologist and a rheumatologist, if possible.

I eagerly await additional research from Mayo Clinic on autoimmunity in POTS patients.  If anyone at Mayo is reading this, or any other interested researchers, I really want to see a trial of IVIG therapy on POTS patients with confirmed autonomic neuropathy and a suspicion of autoimmunity.

Since I started IVIG one year ago, I went from being bedridden to almost normal on my activity level.  I had a mild dilated left ventricle cardiomyopathy.  After a year of IVIG, it is not showing up on my cardiac MRIs or echos, so it seems to have resolved.  I just had my one year repeat skin biopsies, and I would bet good money that my sudomotor and sensory small fiber density has improved.


  1. I don't usually comment but this strikes so close to home! I have had POTS since I was very young. This year I was diagnosed with Igg deficiency and am now on IVIG. I feel great. My daughter has Iga deficiency and so currently does not qualify for IVIG treatment. Your post gives me hope for the future!
    Mary Ann

  2. I too have POTS and recently have fallen into a bad spell. I was able to complete high school and start college, but lately, getting out of bed is a triumphant moment. I have had many tests done to see if I have an autoimmune disease, nothing. Why have the doctors biopsied your skin?

  3. Sarah Willis, I just posted a whole blog post on skin biopsies for POTS patients, Check it out: