Plasmapheresis for autoimmune POTS

[vxmike]

Hello everyone,

Now that we are aware of several studies suggesting that autoimmunity alpha and beta antibodies are often found in POTS patients that don't fall under the Hyper or primary neurogenic categories, I am curious if anyone here has tried plasmapheresis as a treatment to remove antibodies?

I'm fairly certain my etiology is autoimmune. I was on prednisone for almost 15 years for skin conditions but was otherwise perfectly healthy. After receiving proper Derm care and stopping the Pred my health has fallen apart. My POTS came on 2 years after stopping Prednisone. I have multiple conditions suggesting autoimmune disease:

POTS not Hyper or neurogenic

Sicca/Sjogrens syndrome - dry eyes/mouth resulting in corneal damage, lacrimal gland atrophy seen on CT

Likely IgG4 related disease with all relevant positive serum markers plus positive PET CT scan

I likely need systemic immunosuppressant therapy especially Rituximab, but I'm curious to try Plasmapheresis to see if clearing my antibodies will temporarily ameliorate my POTS. 

All my issues were not present or kept under control while on Prednisone. I'd merely start the Pred again but once I do that further investigation is impossible and Pred is a poor lifetime medication. Ultimately I likely need Rituximab or other steroid-sparing immune suppression.

Plasmapheresis anyone? 

[Guest KiminOrlando]

Rituxan is a scary drug. If you can try IViG first, that is my vote (if I get one😁).

Rituxan has to go in soooo slow, 9 hours for me. It is different for everyone. On my third infusion, it attacked my body. My chest contricted, I had trouble breathing. I had to get the nurses attention, but couldn't talk loud enough, so a fellow patient got me help. My BP shot up, O2 dropped, temp went up. All of the nurses in the facility had come running and one went to get the oncologist. They stopped the Rutuxan, flushed with saline, and put me on oxygen. I just kept thinking, 'stay calm and breathe. You are in a hospital. They've got this.' It took about 20 minutes for the episode to subside, but it was very scary. I finished the infusion that day, slower, but didn't continue with that med. The whole time I kept flashng back to all the consent forms I had signed waiving liability due to all the known risks. Brain death. Brain death is a side effect? Is this what brain death feels like? I felt like I should have brought a lawyer with me signing consent forms because I didn't know what I was signing.

I know Rituxan does wonderful things for many people. I'm sure it is a good med. If Rituxan is my last resort, I would try it again, but that med scares me. If you end up needing Rituxan, I want you to go in with your eyes wide open asking a ton of questions.

Good luck with your decision. 

Kim