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Johns Hopkins (IVIG study in Post-Covid POTS patients)

Belbyr

Senior Member
Messages
602
Location
Memphis
seems likely this is the drug they are trying:

Vyvgart. it reduces the volume of anticholinergic antibodies floating around.

https://www.fda.gov/news-events/press-announcements/fda-approves-new-treatment-myasthenia-gravis

it costs $6000 for 20mL though! Hopefully people don't need to take it too often.

I just got hit with a Lambert Eaton diagnosis last week based off a nerve conduction study that I had never had done before. Negative for the P/Q antibodies though.
 

Gingergrrl

Senior Member
Messages
16,171
Vyvgart. it reduces the volume of anticholinergic antibodies floating around.

I just read through the info but am confused. Is Vyvgart a type of targeted IVIG or is it a different type of medication/ treatment?

it costs $6000 for 20mL though! Hopefully people don't need to take it too often.

It is cost prohibitive (like IVIG) so people who qualify would have to get it covered by insurance or get it as part of a research study.

I just got hit with a Lambert Eaton diagnosis last week based off a nerve conduction study that I had never had done before.

I apologize if I missed this when we were chatting earlier but did the nerve conduction study show a specific abnormality? I was just curious in comparison to mine. My EMG & nerve conduction tests (back in 2016) were not done properly and the abnormality that they showed was that one of my phrenic nerves to my diaphragm was only working at around 50% (at that time).

Edit: I just updated this b/c I realized that my EMG & nerve conduction tests were in 2016 not 2015 :headslap:
 
Last edited:

Belbyr

Senior Member
Messages
602
Location
Memphis
I just read through the info but am confused. Is Vyvgart a type of targeted IVIG or is it a different type of medication/ treatment?



It is cost prohibitive (like IVIG) so people who qualify would have to get it covered by insurance or get it as part of a research study.



I apologize if I missed this when we were chatting earlier but did the nerve conduction study show a specific abnormality? I was just curious in comparison to mine. My EMG & nerve conduction tests (back in 2015) were not done properly and the abnormality that they showed was that one of my phrenic nerves to my diaphragm was only working at around 50% (at that time).

Dr Chemali (POTS neurologist in Norfolk) did an EMG test on me back in 2016. He placed the needle in several muscles and asked me to flex them. He also did some nerve conduction tests too, but not nearly like my most recent neurologist did.

My most recent neurologist had me do some exercises with my hand that was never done before, and there was another segment of the test where a funny looking electrode was placed on my forearm while others were on my hand. The machine was turned up to 20hz (painful) and after doing it 4 times, the doctors said he didn't need to see any more. He also did the same things Dr Chemali previously did.

One POTS patient on Fb pointed out in one of Dr Chemali's recent seminars, he said LEMS patients can present as having dysautonomia when it's actually LEMS as the root cause.
 

Gingergrrl

Senior Member
Messages
16,171
One POTS patient on Fb pointed out in one of Dr Chemali's recent seminars, he said LEMS patients can present as having dysautonomia when it's actually LEMS as the root cause.

That is REALLY interesting to me and I would love to see that seminar if you can remember the link or how to find it? Back when I used to participate in two private FB groups (one for LEMS and one for the N-type VGCC Ab), I was stunned by the number of people who also had dysautonomia & POTS (like myself).
 

Belbyr

Senior Member
Messages
602
Location
Memphis
I think I am on those same 2 Facebook groups now. The normal LEMS group seems to be plagued by a lot more physical weakness while the N-type only group seems to complain of more POTS/CFS symptoms like myself as well.

I know some doctors don't put a lot of weight into the N-type antibodies but Dr Chemali certainly does, I just hate he missed mine back in 2016, darn!
 

Gingergrrl

Senior Member
Messages
16,171
The normal LEMS group seems to be plagued by a lot more physical weakness while the N-type only group seems to complain of more POTS/CFS symptoms like myself as well.

I was really surprised that (almost) every person in the N-type autoantibody group (regardless of what official diagnoses they were given) seemed to have POTS! I would love to see some research on this some day.

Also, if you ever find the link or info re: Dr. Chemali's seminar about LEMS & Dysautonomia, please let me know! :) :thumbsup:
 

Belbyr

Senior Member
Messages
602
Location
Memphis
Looks up Autoimmune Dysautonomias- Dr Kamal Chemali on Vimeo. I think he speaks about it some around the middle of the video. I can’t link it for some reason.

I see where Rituximab seems to give 9/10 LEMS patients good to great results like yourself, in that facebook group.
 
Messages
91