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Davidgonza 04-06-2021 06:41 PM

MG, immunosuppressant and Covid-19 experience.
Hi, Iím Carlos. Iím new to this community and just want to share my recent experience with Covid-19 vaccine. I was diagnosed with MG in 2003 and under treatment since. Back in February this year I had my annual Gammaglobulin infusion and because I was about to receive the first shot of the vaccine I decided on my own to pause the immunosuppressant therapy to make sure; at least in my mind, that the immunosuppressant would not interfere with the vaccine efficacy. Also thought that I was covered with my Gamma recent treatment. So, early March, I had my first shot and that same day I felt a little weak and a little short of breath but thought it was the stress and anxiety of the moment. Within a couple of days I had an exacerbation on MG symptoms especially my eyes with diplopia and eyelids dropped almost completely most of the days. I started a pack of Methylprednisolone that eventually alleviated the symptoms. Bottom line, pausing the immunosuppressant therapy was not the best idea. Iím waiting for the second shot in a few days, prepared with another pack of prednisone and restarted the immunosuppressant.

bny806 04-07-2021 10:48 PM

Thank you so much for posting this, I am so nervous about it causing an exacerbation, and have been told to pause my immunosuppressants the weeks I get the injection too. I'll be looking for your update! Good luck, and again, thank you!

Davidgonza 04-10-2021 09:55 PM

Hi! Just received the second dose today, early this morning. No exacerbation so far, only the usual vaccine related immediate side effects like pain and warm sensation at the injection site. Honestly; afraid to say this, but I feel completely normal. Anxious to wake up tomorrow and see how my eyes will be reacting. Will post tomorrow morning one way or the other.

Davidgonza 04-11-2021 03:47 PM

Hi. Day after second dose of covid-19 vaccine update. So far no MG symptoms exacerbation. Residual generalized weakness and droopy eyelids has stayed unchanged since first dose.

bny806 05-06-2021 10:26 PM

Thank you so much for your update, and documenting this for us. I am debating getting it, and I'm so nervous. But of course just the anxiety of it can cause issues nevermind the holding of the immunosuppresants (which i've also been advised to do), and the immune stimulation of the vaccine.... Thanks again - hope your well!

Davidgonza 05-13-2021 05:31 PM

Hi. Just a quick update to inform that no side effects or MG symptoms exacerbation after month and a half of the second dose.

Tanyaec 06-20-2021 03:49 AM

Not happening
Sorry, I read the vaccine inserts which clearly states it incites an autoimmune response. No way I am even considering it. ** 😔

bny806 06-26-2021 10:56 PM

I got my first one almost 3 weeks ago, holding my immunosuppresants and SQIG... did have some exacerbation after it (droopy face, snarl of a smile, and generalized weakness with some swallowing issues).. but tolerable.. and got much better once i got back on my immunosuppresant and SQIG... I have shot number two this week.. and I am nervous for that one! But with the new data coming in about the effectiveness with the delta variant, I'll be happy to hopefully have some immunity, esp with the littles headed back to school in August

Sculptor44 08-22-2021 06:27 AM

Thank you for this. I am really concerned about not being vaccinated. I only get treatment beyond my Mestinon thru trips to ER when walking and breathing get too bad so assuming I would get help if I get worse with my current health is not safe. Thinking, understanding and treatment of MG here in Iowa is extremely poor. It took me 3 years after my first trip to Mayo to get them here to do the MRI Mayo recommended. Sculptor 44

Bear63 08-31-2021 02:19 AM

Hi I'm Bear (yes that's actually what my family call me!)
Hi! I'm a newbie! Thank you all for being patient if I mess up this formatting thing.
I've had three doses of the Moderna vaccine.
The first and second doses (last week of Mar 21/First week of May 21) was back when the data was recommending that pausing immune suppressants wasn't recommended.
When the third dose became available, I asked my neurologist if that was still the advice and was told, since my condition has been stable for a number of years, that I could stop taking my immune suppressant for two weeks after the shot. So, check with your doctor and see what they say.
I got the third dose 4 days ago.

Here are my experiences so far:
  • 1st shot--sore arm duration 48 hours
  • 2nd shot--arm not as sore, but a little headache, mild fatigue for about 24 hours
  • 3rd shot.--without immune suppression--arm HURT! (two days), some swelling and tenderness of lymph nodes in armpit of same arm(still there 4 days in), headache (about 8 hours), mild nausea (about half a day, and all I wanted to do was SLEEP for 14 hours the first night. So, maybe I got off easy on the first two doses because of meds.
Definitely worth it. Crossing fingers for robust antibody response for protection but without a flare of MG symptoms for everyone.:)

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