I've started taking Propanolol and would be interested in hearing others experiences with it. I did a search for Propanolol in the discussions and can't find any mention of it outside of mads referring to it as a "second line" therapy.
Does anyone here currently take it? How has it affected your EM? Thanks!
I do take Propranolol 20 mg twice daily. It didn't help my EM, but lowered my BP, so I still take it.
I took Propanolol for many years as migraine prevention. It never gave me any relief for EM and eventually ceased being effective in preventing migraines. I no longer take Propanolol.
I took it - did nothing for EM
Hi Carter,
Yes i have tried PRL and found it needed to be in conjunction with lidocaine to have any nominal effect. Agree with Mike and that PRL doesnt help. PRL is commonly used in rosacea for 'flushing' as thought to block beta2 adrenergic vasodilator nerves (atypical in beta blocker).Down side - may make Raynauds worse; but you dont have Raynauds. Also, erythema is a known side effect of PRL- which you dont want. Dosages usually 10 - 300 mg daily. Has half life so x 3 usually prescribed.No solo drug really helps EM and most of community have a treatment package. A polypharmacy approach to EM management is the best way forward.
Hope things are still improving. Drop me a line ;)
Big hug
x
Thanks for the responses!
I asked this question open ended without sharing my experience because I didn't want to color the conversation or discourage responses. I'm a little surprised the responses have been universally negative.
Here's the deal. I have a neurological condition called Essential Tremor. It is familial on my paternal side. ET is the most common movement disorder. Beta blockers are often prescribed for ET and I have had a prescription for Propranolol since I was a teenager. It's not something I take regularly because Beta blockers cause abnormal heart rate response during exercise. Vigorous cardiovascular exercise concurrent with Propranolol can cause my blood pressure to drop too low. Thus, my prescription is "as needed" for stressful situations.
I began thinking my EM might benefit from Propranolol due to my recent intolerance to salt. I've found that eating salty meals and snacks is a major trigger for my EM. It's known that dietary salt induces temporary hypertension within the cardiovascular system. I further observed during my second phlebotomy that my EM totally vanished when I had an episode of low blood pressure following the procedure. This occurred while still at the transfusion center, prior to the administration of an IV. Thus, given these facts, I concluded I might obtain therapeutic benefit from Propranolol.
As I already had a prescription for it, I began taking it on Tuesday. I've been surprised how effective it has been. I'm not having flares during sexual activity anymore. My knees and feet are staying cool most of the day. As Propranolol has a short half life, I do have to spread it out during the day to maintain effectiveness. The benefit, however, is unmistakable. It turns my knees and feet cold. I've not taken any more than 40mg in a day.
Obviously, my EM is a different beast than most others here. It seems strongly correlated to my blood. Propranolol has not cured my symptoms, but it has improved them. I have an appointment with a neurologist on Monday to discuss these results.
Hi, I took it for just a few days and didn't seem to do much for the EM; I think it just made my feet colder between flares.
Here http://www.ncbi.nlm.nih.gov/pubmed/11050591 it says:
"Different subtypes of erythromelalgia?
Belchhas categorized 3 subtypes: thrombocytosis/
hyperviscosity, microvascular ischemia (vasoconstrictive),
and vasodilatory. Whereas most patients
exhibit the vasoconstrictive/reactive-hyperemia type
that responds to the infusion or invasive approaches
mentioned above, the less common vasodilatory type
will worsen with these therapies. Conversely, the latter
may respond to the vasoconstriction of unselective
beta blockers like propranolol, whereas the former
will worsen with such treatment. To differentiate
these types, Belch recommends vascular studies performed
in warm and cool environments that include
Doppler pressures, laser Doppler flowmetry, thermography,
and tissue PO2 monitoring. The Mayo
Clinic often performs nerve biopsies."
Take care
Tarsius,
I'm having trouble finding the above citation at the link you provided. I can't get beyond the abstract.
I've improved from phlebotomy and propranolol, which would seem to indicate different subtypes (hyperviscosity and vasodilatory, respectively). Does that seem right?
I still question what is going on with me, as my experience seems so different from others here. First, I had severe joint pain for months prior to any flares. Second, when I did finally have flaring, it hit like a freight train. I was icing my knees for 20 hours a day and there was severe pain. I could barely stand. Third, it substantially improved following phlebotomies. It's gotten better still with propranolol.
I just went for a 6 mile walk this afternoon, whereas 2 months ago I could barely stand for 60 seconds.
It's all very difficult to explain.
Hi CarterDK,
You can find it here, in a post by mads:
FileNotFound*c58Ghg-DgYkqVZT2KiR1SICdkPZ1nPw2ovmuD7IpyZEWTg/CohenErythromelalgianewtheoriesandnewtherapies.pdf
_
and the original post I got it from:
_
http://forum.livingwitherythromelalgia.org/forum/topics/my-story
You having the two subtypes seems possible but I'm not a medical doctor so I can only speculate. You did have a really strong start. I'm really glad you found things that work for you! I'm on sertraline (50mg) + aspirin (100mg) a day and, whilst I still have flares when I leave the house and walk for a bit, sleeping has been much easier.
It is a very confusing syndrome indeed and that varies a lot between people!
Take care
I take propranolol 10 mgs when I know I'm going to be around stressors. Mainly, before I drink wine (which we all know is a "no-no"). I think it does help me, but not always. I get side effects from meds and don't take it regularly, but I do use it before a spritzer.