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.
@crypt0cu1t @Jesse2233
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.
@crypt0cu1t @Jesse2233