Got a doc's note and got my first vaccine dose!

My primary care doc decided that, while there’s no data to go on, it is reasonable to suspect that EM might put me at heightened risk for Covid complications because of vascular involvement. She wrote a letter saying as much and suggesting that I be included in my state’s current phase of vaccine rollout. While it was not great to know a medical professional came to that conclusion (though I’d been living according to the assumption I might be high risk), the great news is that I just got my first dose of the Pfizer vaccine! No issues other than sore arm and fatigue so far, no extra EM flaring (not that I had any reason to expect that - just letting you know all went well)!


My mom got her 2nd shot today at CVS and also got me on the wait list. She told the nurse— “Look, he needs a shot. He shops for my groceries. He helps me around the house. If he got sick, I’d be in bad shape.” The nurse said— “let me see what I can do.” The nurse came back and said they’d put me on the wait list, adding that they often have leftovers from people who don’t show up. So, we’ll see.

My state still hasn’t made people with pre-existing conditions eligible for vaccination.

I fully support getting the vaccine, but my EM has been worse since the 2nd dose of Moderna. I might try and find a different one if you have a choice. I’ve talked to 2 others that had similar issues. I had no real issues after shot #1 except some light flu like symptoms for 24 hours. Dose 2 I had no other symptoms except my EM has been flaring worse and it’s been over 4 weeks now. At first I thought it was maybe the extreme cold front we had but now it’s still flaring worse, Frustrating.

@gwadley Can you give more specifics?

What was the frequency of your EM symptoms before vaccination and what is the frequency now?

Do you have comorbidities besides EM?

Sure. Had EM for about 15 years. Also have SFN as diagnosed by biopsy. I take both Mexilitine and Lyrica. Mex 200g 3x/day. Lyrica 200mg 2x/day. On both I’d normally flare 1-2x a day but be able to get it under control in an hour with fans and spritz bottle. Without these 2, I’d flare on and off most of the evening night. Since the 2nd Moderna I’ve been less heat tolerant and flaring more in evenings/nights. I was sleeping through the night most nights, now I’m having to get up 1-2x a night. Very frustrating. Last night was the 1st night I’d slept 7 hours in a week. Tonight took 2 hours but got my evening flare under control and went to bed. Within 15 minutes I was flaring again. Intensity of flares has increased too. More purplish color now than before. I’m an experienced EMer. Done tons of research. Went to Stanford last year for a 5 day lido infusion but I didn’t get any more long relief than I was already getting on Mexilitine. I’m still functioning, but has been a noticeable difference. I know others that have taken Moderna without issues so I’m not recommending people not get it. Everything in life has some risk. Risk of not getting the vaccine is dying so I’d do it again. Still wish I’d go back to baseline.

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I definitely know you’re an experienced EMer! So it sounds like you went from flaring 1-2 times a day to 3-4? With the intensity of the flare increased? Have you considered having a CRP or ESR test to check if you’re experiencing increased levels of inflammation?

All of my doc’s told me to expect pain and inflammation. I did not have much added pain or inflammation at first but by the end of the first 4 weeks I was flaring pretty badly and retaining a lot of fluid. I also am B cell deficient and have Hyper IgM (almost no IgG and high IgM) so I am super susceptible to viruses. We checked my antibodies Friday, I hadn’t made any. I decided to go through with second dose yesterday bc I am overly optimistic but I instantly turned red and ran a fever. Taking benedryl and narcotics. But still optimistic. I am taking extra lasix but cardiologist is talking about admitting…I will keep an eye on the swelling. All that to say, the redness is bad and I am not comfortable but I am grateful to have had the chance to get the shot. I am grateful and I am hopeful I eventually make some antibodies. If the second dose doesn’t do it’s job I will likely be stuck at home another 6 months or so until covid antibodies turn up in my biweekly IVIG bags. So again, I feel fortunate for the shot and hopefully getting some antibodies so I can maybe get out of the house a little bit…even if it does mean some swelling and heat. As horrible as erythro is,I look forward to getting back outside and not being so fearful of infection. We are all so different though and our tolerances are different. I think it depends on how you choose to look at it and what you make of the experience ultimately.

yea, it’s really intensity of flare and flaring more easily either heat or sun. I’m going to give it another month or so and see if things settle back down. I do have a call into Stanford as it takes a few months to talk to a doc anyway so figured might as well tee something up. I’ll still get the vaccine again when I’m ready for a booster, but might try the J&J one as it’s based on tech similar to the flu vaccine and I’ve never negatively responded to that and I take it yearly. But several people on the EM facebook group have had both Moderna and Pfizer without much incidence so if anyone is debating they should talk to their doctor and not make decisions based on my experience.

I hope things return to your previous baseline for you soon. I definitely will get vaccinated when I can. The issue has been that I’m just not eligible where I live. I feel like I’m pressing my luck with recent activities and worry I’m going to get infected when we may be so close to the finish line.