POTS, antibodies and immunosuppressant drugs.

[Castorp]

I was recently placed on Ivabradine for PoTS with strong tachycardia and elevated BP upon standing. Do you recall about how long after starting Ivabradine you started noticing decreased tachycardia?

Ivabradine (5mg twice a day) was not useful for me. In contrast, my tachycardia decreased with betablockers (propranolol or bisoprolol), although they did not have any effect on my remaining symptoms.

 

[MegHermes]

Hi there @Deebeewaldo,

I appreciate this may be a shot in the dark as you have not been active in a while but I was wondering if you ever got a doctor in Ireland or Spain to prescribe IVIG? I live in Ireland as well and would like to try IVIG and my GP also thinks it would be a good treatment for me, but unfortunately there is only so much she can do and really I would need a specialist to prescribe it...

Hi @Castorp ,

I have just seen your post and I am intrigued as I sound similar in some ways.

I initially fell ill in March 2018, but got another viral infection in late December 2019, some doctors do wonder if it was a mild case of Covid 19, but there was obviously no testing then. I was not able to access a COVID antibody test until 12 months later in January 2020 and this was negative, but I have since read a study showing that something like 30% of people infected with Covid-19 do not subsequently produce detectable antibodies, so who knows if it was that or not.

I am also in Europe - and just recently made contact with a doctor in Spain who is familiar with the Celltrend tests, and the concept of autoimmune POTs (none of the doctors where I live - Ireland - seem to be familiar with this, or interested in learning, sadly).

I was wondering if you would mind sharing with me who your Spanish doctor is? To see if it is the same doctor I am working with? I am due to visit this doctor in Spain in November hopefully. I have not yet been trialed on IVIG, and hoping this Spanish doctor might consider it for me.

Because I also have other overlapping autoimmune issues - although not clear what exactly, positive speckled ANA, titer varies from 1:80 to 1:1280!, multiple symptoms, vasculitic lesions, erythromelalgia, and a bout of autoimmune hearing loss in April 2021 which was responsive to high dose steroids. In Ireland, doctors have given me plaquenil and ldn, both of which have done nothing unfortunately.

In Ireland, the doctors are now considering Rituximab since the bout of autoimmune hearing loss I had in April, but I would prefer to try IVIG first, given we are in a pandemic, plus my husband and I would like to try have children as soon as possible if my health stabilises.. This is also partially because when I was previously given steroids (not for the hearing loss but before that), I was given a high dose for a short period, and tapered very quickly - this caused an outbreak of shingles. So it seems it is quite easy for infections to react in my body while on immunosuppressants, so I would much prefer to try IVIG first compared to Rituximab. In Ireland IVIG is not used for cases like mine, hence why I have started to look in other countries for doctors who are familiar with this.

Of course I understand if you prefer not to share the doctor's name, and hope you have success with treatment.

Thanks for any help, Dee