I wanted to pass on something that happened to me recently. Since September my erythromelalgia has been terrible - flares every day, carrying ice packs wherever I go. Then my neurologist told me to come off of amlodipine becuase it has a high interaction with myasthenia gravis. Well, that was a week ago and since then I have barely had any erythromelalgia symptoms as well! I did some reading and did find that that type of blood pressure medicine can aggravate that as well. Just wanted to pass this along in case anyone else has been experiencing the same.
Be careful with amlodipine: I wanted to... - The Erythromelalg...
The Erythromelalgia Association
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Be careful with amlodipine
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Goldyukr
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Vvvv interesting point
meds have increased my EM too, eg nifedipine (I was only on it 4 days 6 years ago for raynauds, but even so nifedipine has permanently made my EM more severe than it was before I took nifedipine)
Me too! I took only one pill back in August and the reaction was terrible. Immediate bright red swelling in my feet, knees and face and my resting heart rate raised to 100.
WOW: GLAD you replied 😆....are you diagnosed with simultaneous raynauds & erythromelalgia?
Sometimes they say I have raynaud's sometimes not. I see a new rheumy next week so I'm curious to see what he says. My feet turn blue when I sit or stand for 15 minutes or so though and they hurt terribly and won't warm up when they get cold. I do have erythromelalgia for sure though. That's been the worse of the two for me.
I can relate to this: my raynauds runs alongside vascular ehlers danlos hypermobility which predisposes me to blood pooling in my extremities, so raynauds & erythromelalgia colour changes overlap with EDS colour changes: the bloodpooling also makes my hands & feet go purple
Hope you'll let us know what this rheumatologist says
Very interesting! Hadn't heard of that. I'll do some research on it. Thank you and yes, I will let you know how it goes. My last rheumy got hung up on fibromyalgia and stopped looking for any actual diagnosis. I'm so glad I found a good neuromuscular specialist. If I hadn't, he said I could have been in a wheelchair by now.
I think we met here before...my primaries are infant onset lupus, vascular ehlers danlos hypermobility, with early onset Sjogrens & Primary Immunodeficiency (hypogammaglobulinaemia + lymphopenia). So the raynauds & erythromelalgia are secondary to all that...along side several other immune dysfunction secondaries.
I too had consultants tell me in my 30s that I'd be in a wheelchair by 50. They were right, but I've managed to get out of the wheelchair by exploring the health system & finding the right consultants
At 63 am feeling less pain & more stamina + resilience than I've had since my early 20s
Am wishing you 🍀🍀🍀🍀
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