CellCept for autoimmune POTS

[Castorp]

I fell ill in March 2020 with what seemed to be a virus and I have still not recovered. My main symptoms include an unrelenting and profound malaise 24/7 every single day during the last 21 months, a feeling of fever (although my temperature is usually below 98.6°F) and tachycardia when standing. I am positive for alpha1, beta1 and beta2 adrenergic antibodies (CellTrend test), which has been used by my doctors to justify the diagnosis of autoimmune POTS. Additionally, I also have elevated FGFR3 antibodies, which in combination with the results of a corneal confocal microscopy and a sudoscan test seems to suggest the presence of autoimmune SFN. Moreover, I have positive ANA results, although the presence of another autoimmune condition have been ruled out so far.

Following the recommendations in the literature, during the last year I have attempted pulse steroid therapy, IVIG and plasmapheresis, but unfortunately I have not experienced any change in my symptoms. This means that I spend most of the day in bed, suffering constantly, without any improvement for the last 21 months.

At this point, my doctors have decided to start with CellCept (mycophenolate), an immunosuppressant drug used to prevent rejection in organ transplantation and off-label in some autoimmune conditions. I am a bit concerned about the potential risks of this treatment and I wonder if any other of you with autoimmune POTS/dysautonomia or SFN have gone this route. If so what was your experience like? Did your condition improve? Did you experience serious side effects from CellCept?


Thank you in advance for your help.
 

[RecipeForDisaster]

I’m intrigued… I haven’t had CellTrend, but I have the elevated FGFR3 at 7000 and a positive ANA(homogeneous and speckled) plus no autoimmune diagnosis (not SLE or RA). What kind of doctors do you have running this treatment? I haven’t found anyone who would do so. It sounds like you have some great doctors!

[Castorp]

Hi @RecipeForDisaster,

To the best of my knowledge FGFR3 autoantibodies seem to be linked to autoimmune mediated dysautonomia and SFN. In my opinion, this and a positive ANA should be enough to justify the employment of IVIG (and eventually plasmapheresis).

If you are interested, you may have a look at the following papers and discuss them with your doctors:

https://pubmed.ncbi.nlm.nih.gov/33792960/

https://pubmed.ncbi.nlm.nih.gov/30889595/

https://pubmed.ncbi.nlm.nih.gov/32171889/

 

 

 

 

 

[RecipeForDisaster]

3 hours ago, Castorp said:

 

Hi @RecipeForDisaster,

To the best of my knowledge FGFR3 autoantibodies seem to be linked to autoimmune mediated dysautonomia and SFN. In my opinion, this and a positive ANA should be enough to justify the employment of IVIG (and eventually plasmapheresis).

If you are interested, you may have a look at the following papers and discuss them with your doctors:

https://pubmed.ncbi.nlm.nih.gov/33792960/

https://pubmed.ncbi.nlm.nih.gov/30889595/

https://pubmed.ncbi.nlm.nih.gov/32171889/

 

 

 

 

 

Thank you! I will share… I doubt any of them wants to think outside the box that much, but it’s worth a try! I definitely have neuropathy for no particular reason.
 

How did you do with the IVIG, as far as side effects or reactions? I’ve been a little wary to push for it, but I have a lot of potential reasons to get it - my subclasses are all off(although IG2 is always high), I may have myocarditis or sarcoidosis, etc. The latter will probably get me put on steroids to start, so I guess I’d see if I did better. I'm on colchicine until my PET scan. But I definitely have secondary dysautonomia.

[RecipeForDisaster]

Oh, haha - I already had one of these links open, because one of my physicians authored the paper. He doesn’t seem motivated to go towards IVIG! Go figure. He has my lab results and in many cases, ordered the testing.

[Castorp]

As far as I am aware, IVIG is a potentially useful treatment for autoimmune mediated dysautonomia and/or SFN. In fact, the results by Schoefieid and Oaklander show that around 75%-80% of their patients experience an improvement with IVIG. Nevertheless, this treatment did not work for me. At least, I did not have any serious side effect, only a mild headache after the infusions.

 

 

[RecipeForDisaster]

23 hours ago, Castorp said:

As far as I am aware, IVIG is a potentially useful treatment for autoimmune mediated dysautonomia and/or SFN. In fact, the results by Schoefieid and Oaklander show that around 75%-80% of their patients experience an improvement with IVIG. Nevertheless, this treatment did not work for me. At least, I did not have any serious side effect, only a mild headache after the infusions.

 

 

Good to know. It’d be worth it if it helped any of my issues. Even just the neuropathy. I got through 5 iron infusions no problem, so hopefully I’d weather this, too. I would definitely pair it with my home hydration. Keep us posted and good luck!