Hi, community.
I have a (new) diagnosis of hypertension, which means yet another tablet to add to my cocktail.
The proposed first line treatment, apparently, is Amlodipine. However, I am wary of this drug, in case it worsens my Erythromelalgia, which is pretty bad anyway, and getting worse all by itself.
I should like to hear from others who have taken (or are currently taking) Amlodipine. Has anyone had any adverse effects, particularly concerning EM, Raynaud's and lupus? Thanks.
Amlodipine is a calcium channel blocker.
"Calcium channel blockers
Calcium channel antagonists have been proposed for use to attenuate the vasoconstriction and reactive hyperemia in EM. Amlodipine, nifedipine, and diltiazem have been utilized with isolated reports of remission.52 Use of high-dose oral magnesium has been reported in 12 patients recruited via an informal survey through The Erythromelalgia Association. Of these patients, 61.5% reported varying degrees of improvement. Two patients’ dose titration was limited by diarrhea as an adverse effect.52 In addition to calcium channel antagonism, magnesium was proposed to have sympatholytic and muscle relaxant qualities to account for potential efficacy."
ncbi.nlm.nih.gov/pmc/articl...
It has been used in erythromelalgia and in a few cases improved the symptoms. Which suggests it shouldn't worsen it,
Thanks, PMRpro.
That's helpful and interesting.
How are you?
Improving 
My back problems seem to be almost gone 
Now just need to get fitter!!!!
That's brilliant! I'm so glad🙌🎈🥂🙌🎉!
Do you have plans for how to get physically fitter? I've been trying to psych myself up to go back to the gym. I've lost an awful lot of muscle strength over the last few years and I find myself thinking: " What's the point, if it turns out that I can't make that back up?". Not the right way to think about it, I know. Good luck to you, anyway.
Txx
Hi I was given amlodapene and I had really bad reaction my left leg was terrible swollen and yes my feet were turning blue then white and the itching lasted gor over 8vweek s even though I'd stopped the med I had the same sensation in my hands for me my symptoms resembled eruthomyalga this blood pressure med really upset my body even now my leg has never returned to as it eas before I took these meds. Kay
I took a amlodipine for years and was ok until they wanted to double the dose. Got really bad ankle swelling so they switched me to Lercadapine which was no better
I am now having to try doxasosin
Hi, Sarah74.
Thanks for this. Ankle/foot swelling is one of the side effects others have mentioned. I'll look out for that, if I go for Amlod.
Tx
How are you getting on with this new med now? Hoping you find a suitable tablet.
They changed me to lercadapine.
I have lots of foot ankle swelling but this is also because my renal function has declined I think x
Sorry to hear this. I've been taking mine now since we last chatted here and weirdly enough I had problems with my eyes before taking them and I find it's gone and I can see more clearly at the moment Hope it stays that way. I haven't experienced any swelling but not sure if it's affecting my joints a little as twinges of pain in my joints similar to my Lupus flares. Hoping the news meds work for you. Keep me posted please. Good luck x
I'm on amlodipine. No problems. I also take bisoprolol which made me feel sluggish so I got the dose lowered. My resting heart rate is 60bpm but my blood pressure is still too high (158/78).GP hasn't suggested anything. Maybe he thinks it'll drop if I get off pred.
You need to push with the high blood pressure reading. I had to tell the doctor I wanted a tablet to reduce the reading as I am too young for a stroke. Maybe bring it up with them.
Thanks, I've tried. No decent GPs at our practice right now! Mind you, I was asked to submit home readings which average out at about 139 systolic which they think is OK. At rheumy appointments they only do one reading despite my protests that I need 3. They also don't follow the protocol for doing BP measurements.
I take amlodipine for high blood pressure caused by the first immunosuppressant they tried for my lupus. I have had no problems taking it and it hasn't made my erythromelalgia any worse either. I hope it helps you too Skylark 🤗💜🌈xx I take 5mgs daily now although I started on 10mgs
That's reassuring to hear, Krazykat26, especially about no worsening of EM 😀. I'll talk to my GP about all this and decide. There are other anti-hypertensives to try and as I'm on 50mg of Losartan (for Raynaud's) anyway, I might just suggest upping that a bit. I have been wondering just what my BP would be like without the Losartan, but ...!
T.
Amlodipine has done wonders for my Raynaud’s symptoms. I can go grocery shopping without my fingers turning white in the frozen food section. I don’t have to worry so much about my hands in the winter. It alone wasn’t able to control my hypertension, so Losartan and Bystolic were added.
Hi, Guatmom.
That's interesting. It often takes a bit of trial and error with a new drug, doesn't it? I'm glad that Amlodipine has helped your Raynaud's so much. I wish I could persuade my sister to try it; her hands are white pretty much all winter and she wears heated gloves in supermarkets. Not brilliant for taking things off shelves 😁.
Tx
hi skylark15
I have been on amlodipine for a while but had to stop it recently as it caused a lot of swelling in my legs and ankles xx
Hi, Maverick77.
I'm sorry about the legs and ankle swelling. Even without Amlodipine, the hot weather makes my feet, ankles and lower legs swell up. I can't fit into any shoes or if I have to, it is really painful. I welcome the lower temperatures over the last few days. I'm kinda used to my feet being like blocks of tingling ice. That is always worse at night, with added pain around the soles of my feet, my heels and around the sides, so wherever I try and rest them, it hurts. Hey ho.
Tx
Sorry to hear this. Hope you're problem is resolved now. Can I ask what strength you were on as just started on a low dose and it will be increased gradually and that is my concerns any side affects as have so many problems with different meds. Thanks in advance.
Hi, Sashappy. In the end, I wasn't prescribed Amlodopine, j ust a slightly higher dose of Losartan. Good luck.
At first I was prescribed 5mg and then increased to 10mg. I was on 10mg for a long time before we realised it was causing the swelling. I stopped the amlodipine and am now on 20mg of lisinopril twice daily. I hope u get sorted🤗
Are you on sildenafil for any of your diagnoses? When I was just on amlodipine, it did not make my EM worse. But when sildenafil was added, I experienced swollen feet and ankles and hand flushing on the first day; on the second day - flushed cheeks&nose and numbness in 2 fingers and one leg&foot, in addition to swelling of feet&ankles. After that, I discontinued use. Now, I am prescribed just sildenafil for my EM (along with pregabalin & LDN). However, my EM is still not under control.
Hi, GrandMAptm.
Thank you for your response. I'm sorry that your EM is still not under control. I feel for you (literally!).
I'm interested to hear of your experience with Sildenafil-and that you perservered with it. Did the side effects (swollen ankles and feet etc) go away? I tried Sildenafil but only for a short while: it made my feet and ankles swell so much that I couldn't bear the pain and stopped taking it.
Tx
Hi skylark15,
My original trial of sildenafil with the amlodipine was with my local dermatologist. But she referred me to a dermatologist that specialized in EM (I also have severe refractory Raynaud’s) among other difficult diagnoses. The new dermy first had me try pentoxifylline titrating to a dose of 800mg 3x per day. I could not tolerate that dose. Next sildenafil, titrating to a dose of 20 mg 3x per day. Even though after 24 days that was not helping with the EM, I did not have any increased swelling. Then pregabalin was added, titrating up to 75 mg 3x per day. Then some things actually improved. The surging pain that I experienced when lowering my feet from my bed reduced in intensity and duration. The number of morning EM-flares also slightly reduced in frequency and intensity, although afternoon/evening flares remained the same. Pregabalin also helped reduce the numbness/pins&needles sensation in legs/feet and overall pain.
But then I was having increased episodes of icy cold feet/toes (with blueish/black toes) some nights, alternating with nights of hot flaring feet. To try to reduce that fluctuation, then misoprostol, titrating to 400 mcg 2x/per day was added to the mix. But that did not help. In fact, swelling of feet and pain levels were worse on that medication.
All this occurred about a year ago. Now I am in the process of titrating on the LDN (low dose naltrexone) prescribed by Pain Management. So far I am tolerating it well although it has not yet helped with the pain of EM-flaring. I was prescribed 0.5 mg to begin with for 2 weeks. Then every 2 weeks increasing by 0.5 mg to the goal of 4.5mg. Right now I am doing 2 mg, so I still have a ways to go.
I regularly take metroprolol and only use amlodipine when BP gets really out of control. I don't really remember having issues with it and I have CLL and lupus
Thanks, JerrysGirl3.
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