Has anyone asked their doctor if people with erythromelalgia are at higher risk for serious symptoms? The answer to this question could determine whether some of us are vaccinated early on or much later.
I haven’t had this discussion with my doc, but given it’s a blood vessel disorder and Covid impacts blood flow and clotting, etc., it makes sense that we may be more susceptible to worse symptoms. I the medical establishment would look into it.
I doubt they would know specifically about the risks for EM, especially since the exact cause of EM is still unknown. I would assume though that since it is an autoimmune condition it increases COVID risk seeing as what makes COVID so dangerous is the overactive immune response cytokine storm. What can definitely be a risk factor are medications. I had a respiratory infection that lasted 2 months last spring. It was potentially COVID but I could not get a test. I switched my BP medication from propranolol to metoprolol and rapidly improved. I attribute it to propranolol being non-selective and causing airway constriction which made it hard to clear mucus, something the metoprolol does not do. Another risk factor with EM is that is can also be a sign of an underlying illness or cancer which would also raise the COVID complication risk. In your case specifically, I would say it doesn’t add any risk other than the propranolol since you are young and healthy otherwise.
EM is certainly a reason to contact your physician about an early vaccination but I think patient action would be needed to make this happen. It seems as though the vaccinations will largely be distributed by the end of the Spring so even if early vaccination isn’t possible, there won’t be too long of a wait.
That’s not really established, is it? At my worst, blood work found no markers of increased immune activity. Everything was at the lowest range of normal.
Also, the only medication I take now is 150mg of mexiletine once a day.
No, it’s not established. It appears to be autoimmune in some cases but other than that nothing is really known about EM. The way I am treating it is that my EM can possibly be autoimmune or at least that something is out of whack in my body. I view this as a weakness and think there is a chance that my risk factor for COVID complications is higher because of it but I honestly have no idea. I wish there was more info out there about it. Even in med school they don’t teach us about it. The only time I’ve seen it was in a talk on polycythemia vera where it is a possible symptom. We have covered Raynaud’s on a few occasions which is frustrating.
Congrats on getting off of the propranolol! Less is always better. I actually finally gathered the courage to start my mexiletine taper and have been taking it once daily for the past week with no changes yet.
I scheduled an appointment with my doctor next week and intend to specifically ask this question. I will update this post after my appointment. Hopefully he can provide some clarity!
My doctor thought COVID could potentially make EM symptoms worse but was equivocal on whether EM would cause COVID symptoms to be worse. He didn’t give a direct answer to the later.
In other news, he thinks I could potentially stop mexiletine altogether. 150mg once a day is not a high enough dose to be therapeutic apparently. He said if I’m taking that low a dose without a problem, I may not notice a difference if I simply stop the medication. I did mention the withdraw symptoms I seemed to experience when I missed some doses and he said going to every other day would be an option. However, I said I’d likely wait until the COVID era is over and have been vaccinated before reducing or eliminating mexiletine, which he thought made sense.
He further said because I was young when this began, it’s possible the EM may simply go away and not come back. Younger patients sometimes recover from the nerve issues that trigger erythromelalgia, whereas older patients (over 40) typically do not. He said it was genetic and that there was a 50/50 chance I could pass it to an offspring. It’s possible it could come back back when I’m older, but possibly not. All in all, I felt good about the appointment. He was upbeat and happy with my progress.
I have had EM since I was a child. In 60 years it’s been absolute hell, it’s been in remission, my hands have switched to turning white, not red (¿Reynaud’s?) and my toes have neuropathy. I have a raised CRP but my SED rate is never high, from erythromelalgia any way. I hope it does just go away for you but there are no guarantees. Good luck