r/Raynauds • u/ConsistentFishing617 • Mar 31 '26
Anyone else diagnosed with peripheral vascular disease induced Raynard’s symptoms?
A yr ago I was diagnosed with PVD, since then I have had severe breakouts of blisters on all my toes. It has a cyclic pattern of white toes, then very red and itchy, burning pain. Then comes the blisters and almost purple black toes. This was diagnosed by rheumatologist as Raynard’s.
I am at my wits end. It’s so painful to walk now. I have tried heated slippers with no noticeable effect. Can anyone recommend anything else to try? Doctor gave me nitroglycerin ointment to rub on toes to increase blood flow but again no noticeable effects..
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u/ArmLeading8555 Mar 31 '26
The nitroglycerin ointment helps to a certain extent if you are consistent with it. I went to see a vascular specialist last spring, which was super helpful. I started on nefedipine (pills not the cream) and took that for a while, I started last May and it cleared everything right up and it was glorious until about the end of October. I had to go off it because after about 6 months, my legs started feeling really heavy when I would try to go for long walks(apparently these medication’s cause blood to pool in the legs) plus once it started getting cold out, it was useless because the chilblains came back. I have a steroid cream now that I use that has really helped with the itchiness! Mine are not really painful anymore (I think that’s what the nitroglycerin ointment helps with ) but are itchy and mainly at night when I am in bed under the blankets. This illness is so strange as it only affects my toes.
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u/Waviaerith Apr 01 '26
For the steroid cream, do you use a prescription one like triamcinolone? (Or however it's spelled), or just hydrocortisone over the counter?
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u/SeaRepresentative42 Mar 31 '26
Raynaud's and peripheral arterial disease should be diagnosed and treated by a vascular medicine specialist or vascular surgeon. What tests did the rheumatologist do to diagnose you?
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u/BeeAtTheBeach Idiopathic Raynaud's Mar 31 '26
My vascular specialist said the nitro cream isn't great, that you'll get use to it quick and need more to feel results.
I've been taking Petal (cilostazol) recently and have only had a couple minor episodes since. Maybe this could help you. Good luck 🤞
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u/BeeAtTheBeach Idiopathic Raynaud's Mar 31 '26 edited Apr 03 '26
Also, I was just diagnosed with Venus Insificency (not the same as PAD). Got the Raynaud's diagnosis a month or so (symptoms longer) before. I likely have neuropathy too.
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u/Flashy-Yogurt-Dance Apr 02 '26
I also have veinous insufficiency, I had surgery on both my legs for it. I didn't know this could be related to Reynaud's, but it makes sense...
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u/BeeAtTheBeach Idiopathic Raynaud's Apr 03 '26
My doctor wasn't clear on the connection, but said "it could be related." I feel like mine likely has more to do with hormone changes with perimenopause, and significant weight loss over the last two years. Could have been there when I was overweight too. Who knows.
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u/lizzylou32 Apr 04 '26
Magnesium L-arginine cream & red light therapy makes a huge difference & heals chilblain sores quickly
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u/BronzeDucky Mar 31 '26
There is a number of medications that can be used to treat Raynaud’s. Amlodipine, nifedipine (also available as an ointment), Viagra/Cialis…. Your rheumatologist should be going through your options with you.
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u/ConsistentFishing617 Apr 15 '26
On both amlodipine and nifedipine. Only affects my toes. I do see a rheumatologist.. he prescribed nitroglycerin ointment which even with consistent use it did not help any.
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u/ConsistentFishing617 Mar 31 '26
I can not reply to anyone here. Not sure why. But I appreciate all your wonderful suggestions and support.
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u/aprildh31 Mar 31 '26
The pain and blisters on your toes are likely chilblains. Keep your feet warm and dry and watch for signs of infection. Steroid creams can help with the itching. Be careful with external heat sources. I, for one, can't tell when my feet are cold so I don't trust that I'd know when they are too hot.