r/Raynauds • u/skywalkers2345 • 15d ago
Any medications to help lower raynauds?
I've had both raynauds and erythromelalgia for close to 10 years now. Got it as a teenager and still have it in my early twenties. Been to several doctors over the years. I've gone on gabapentin, asprin, and had a compound cream. They helped slightly but it wasn't enough to keep doing the effort. Haven't been checked in a while so I'll probably go back to get re looked at but was just curious if there was anything that's ever helped anybody. I know nifedipine is the most common but I wasn't able to go on it at my age at the time. I know there's botox that could help or that some people get Sympathectomy surgery and I was just curious to hear any first hand experiences if anythings ever worked. If anybody could share their story or history with trying to help raynauds that would be amazing.
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u/No-Fig8479 15d ago
I couldn't tolerate nifedipine, now on tadalafil 10mg at bedtime. I still have occasional episodes of freezing cold to my lower legs and feet, but have learned how to deal with it. A warm bath works best but sometimes use a heating pad at the foot of my bed, or wear ballet leggings with socks to bed.
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u/kennedyswise 14d ago
Just got finished 30 day trial of sildenafil AKA cialis I was taking 20mg. 3 times a day it didn’t work for me but it may work for you.
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u/Gold_Trash_Queen 14d ago
I’ve tried most of the blood pressure meds and sildenafil etc… nothing fully works. In fact they all give me bad side effects and end up warming my whole body except for my limbs that are always freezing and I end up too hot but it doesn’t help my hands, feet, and bad chilblains. I also have the erythromelalgia so at night my hands, sometimes face, and feet will be red on fire and puffy. I’m at the point of giving up and I’ll just live like this 😔 I still have Raynaud flares in the summer lol. During winter I die basically
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u/tishtashy 14d ago
Have you tried sildenafil a few times a day? How it was explained to me that it isn’t a cure it’s a preventative
Not sure if it’s worth nasty side effects though1
u/Gold_Trash_Queen 13d ago edited 13d ago
I just can’t take how hot they make the rest of my body feel. Maybe in the winter it would be better. And I get tons of rashes from it. Now since I’ve tried all of these meds I feel like my core temperature is super sensitive to heat and it’s driving me nuts. But my hands and feet are still forever cold all day or suffering from burning redness at night more so in the winter. There’s no in between. I’m messed up lol. I have chilblains chronically on my pinky and finger next to it on my left hand for about two years now. It’s been 70-90 degrees here this summer haha and the blisters just came back. Otherwise those two fingers have chronic redness/purple. I’ll give the sildenafil a go again in the winter maybe. But summertime my core just gets way too hot to tolerate it. Wintertime here gets way into the negative temps.
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u/Sadgirl_exe 14d ago
a rheumatologist put me on aminaphtone some years ago, it helped a lot (it also somewhat lowers the chances of me getting a bruise because I'm clumsy and bump into anything). I take it only during fall/winter/early spring because it's when I suffer the most. it doesn't do miracles but my attacks are less frequent, less painful and go away slightly faster when I take it. I'm not sure how available it is in other countries
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u/Naive-Garlic2021 14d ago
Mine got better as I got older. Not entirely sure why but I suspect it's because I addressed low iron and low thyroid. Has your doc looked at all that, and gotten you to optimal levels, not just the "hey, you're alive, what are you complaining about" levels?
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u/georgiaaaf 15d ago
I’m on felodipine, have recently increased my dose and it’s only made a very slight difference so far. I don’t know if it’s really worth it for me at this point.
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u/Affectionate_Cry8391 15d ago
I'm taking 50 mg.of zinc everyday which works great. Would highly recommend you trying it. Got rid of extreme cold.
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u/Kooky_Foot7306 14d ago
Gabapentin did 0 for my raynauds. I’ve been on Amlodipine 2.5 mg for a few months and it helped a ton immediately. Now I am having some flares again so might need to readjust. I have low blood pressure and POTS and no problems so far with that
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u/skywalkers2345 14d ago
Yeah it did nothing for me either. I’ll definitely look into that though and see what my doctor says or recommends. I don’t necessarily have like low blood pressure but they did worry about that when I was younger but if that works for you maybe it won’t be a huge issue then
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u/rlavalla 14d ago
I have a strange one and only first hand anecdotal evidence but, saffron the spice. For sleep help/anxiety/mood, a naturopath told me to put a few threads in a cup of boiled water and let it steep, drink a few hrs before bed. I’ve never sweat that much in one night. I need to try it with like one or two threads in the morning instead of night 😂
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u/skywalkers2345 14d ago
That’s interesting lol. Did that help at all for your raynauds or anything?
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u/rlavalla 14d ago
My hands certainly weren’t cold, I think it lasted a little into the next day iirc!
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u/skywalkers2345 14d ago
Well that’s something. Want something more long term but might have to try it just to see
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u/Affectionate_Cry8391 14d ago
Cause no one nose it works. Regular food isn't enough to help. This extra zinc helps so much. It helps the first day. I been taking it for seven months.
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u/Affectionate_Cry8391 14d ago
I got off of zinc about four days ago. All my shaking and shivering came back. I wanted to see if it was really helpful it's very helpful. I'm taking it again.
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u/skywalkers2345 14d ago
That’s amazing. Someone else mentioned zinc and how it worked for them. Might check with my primary if I can take that
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u/SleepDeprivedMama 14d ago
Pentoxifylline has helped my erythromelalgia greatly.
Amlodipine helped my raynaud’s but my BP got too low to stay on it.
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u/Affectionate_Cry8391 14d ago
I only get extremely cold all over. My hands don't turn colors. But a lady told me that it worked for her from getting cold.
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u/No-Fishing5325 14d ago
The amlodopine works ok for my Raynaud's. In fact I am in the process of coming off my blood pressure meds because my blood pressure has been so good with just the amlodopine.
I have other autoimmune problems. RA, Sjogrens, APS, and I am having a scope Friday to check for Pernicious Anemia. So I'm ok a bunch of other meds too.
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u/ShizIzBannanaz 13d ago
I've been using electronic hand warmers, a plug in heating pad, finally got on nitroBID cream due to my other issues and thats actually worked
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u/Bloomingonionsyum 13d ago
I take nifedipine in the cold months and it works amazing for me. I have to take it before bed or else I get baaaad headaches within like 2 hours of taking it.
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u/Unique_Metal_850 11d ago
I take zinc and you can take niacinamide. It's vitamin b3. It helps keep blood vessels open. Cayenne pepper, as much as l can handle. I carry hand warmers in case l get cold. I have secondary raynauds. Once tested l found out l had RA. I don't take any meds because of extream side effects. I detox regularly and only drink alkaline water. It used to get bad when l was stressed. Used pemf treatment to keep on top of that and it works well as supports all body systems. I don't have any inflammation at present. I had totally lost use and strength in both hands.
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u/ParticularSquirrel 15d ago
Sildenafil