For those who tried and failed beta blockers -
I’m wondering why exactly the beta blockers didn’t work for you. I’ve tried propranolol + nadolol (individually) at different points. It seems like for me these guys make my extremities way too cold (feet, hands, cheeks, nose, lips). Then whenever my temp rises (like in evening, or I eat something) I’ll go to burning/electric shock sensation mode, esp. on my face, where it is the worst. I can continue to go back and forth during the day. It doesn’t seem like the beta blockers prevent this reactive burning.
This happens at 10 mg (half the lowest pill) of nadolol, eg.
So I’m wondering if other people’s reasons for not liking beta blockers are similar. Or if their reasons are due to other adverse side effects that beta blockers can cause.
I guess I’m confused bc beta blockers can help with migraine, which presumably involves blood vessels constricting then dilating (although I think this idea is sort of outdated…) Which makes me think that they should help with EM ppl who have problems with constriction => painful dilation.
Thank you for reading.
As a follow up - How long is a fair trial for beta blockers for EM? It’s hard to know if I give up on some meds too soon, and an initial worsening is just something I have to endure …
Propranolol has a fairly short half life at 4-5 hours. (Half life refers to the time it takes for a substance to lose half its pharmacologic or physiologic activity.) It doesn’t stay in your system for a long time. Certain drugs require you to take them for an extended period before seeing results, particularly immunosuppressants and anti-depressants, but I don’t think propranolol works that way.
Thanks for the reply. So you’re suggesting I would know whether I would want to continue with propranolol after a few doses (or, increase the dose if no harm done)? I ask because I was told at one point for beta blockers like propranolol, when used as preventative for migraines, one would have to take them for 2-3 months to notice an effect. EM might be totally different, I was just checking.
Some ppl say calcium channel blockers can cause an initial worsening of symptoms for EM (before helping), so was wondering if that might also apply to beta blockers
Didn’t do a thing for me. Didn’t make me worse but didn’t help. Magnesium and Predmisone made me a tomato, but most of the other stuff besides Lyrica just didn’t do much. Lyrica helped the most.
Because propranolol for erythromelalgia is off label, no one can give you more than an educated guess. There hasn’t been any testing for its efficacy with regard to erythromelalgia.
In my case, propranolol is modestly beneficial. It was the first prescription I tried for my symptoms. Since the second medication I tried was more effective, I have tried to stop propranolol on a number of occasions. I consistently find a modest uptick in symptoms after about 5 days of cessation. Because that pattern has reliably repeated, I think the medication does indeed provide legitimate benefit. Upon resumption symptoms decrease within a couple days.
When taking medications off label on a trial and error basis for erythromelalgia, a good rule is “do no harm.” If a medication exacerbates symptoms, move on to the next one.
I am allergic to beta blockers they caused me to go into anaphylactic shock. So for me they are out of the question.
Thanks so much for the replies.
Gwadley, I am with you in that lyrica is the best med I have tried so far. Did you by chance try increasing your beta blocker dose to see if anything changed?
Carter, thank you your posts are always helpful . Saying “modest uptick in symptoms after about 5 days of cessation” and “Upon resumption symptoms decrease within a couple days” helps to give me a rough ballpark. It’s not always super obvious to me if something is helping (other than lyrica and anything that helps me sleep).
Sheltie - I’m so sorry about the allergy!! Anaphylactic shock sounds like icing on the cake on top of all you are struggling with. No I don’t think beta blockers are your cup of tea then! xx
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