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Anyone living with Raynaud's?
The last discussion I could find on the topic was from 2017 and just a single question and response. Would love to engage with folks who are dealing with and/or experienced with the syndrome.
I've suffered from the symptoms most of my adult life but was only officially diagnosed about 2 years ago. It was a relief to be able to put a name to it but frustrating to learn that there is no cure and doesn't seem to be any effective treatment. At least nothing my doctor or I can find. I've been diagnosed with primary Raynaud's which is a relief, as it doesn't seem to be a result of some other disease such as Scleroderma but my doctor continues to monitor just in case thing progress.
I tried Sildenifil which was unsuccessful. I'm currently on Tadalifil (started at once/day now up to 3x/day) which has worked a bit better but not much. My doctor also just started me on a twice per day regimen of Hydroxychloroquine. I can't tell yet whether it is helping as the weather is also starting to get warmer which usually helps to ease symptoms a bit.
I would love to hear from others what info they've learned, medications they've tried, advances they've heard of, or tricks/tips they use to counteract the symptoms. New here so thank you in advance.
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@pollywater Welcome to Mayo Clinic Connect! You’ve asked a very interesting question! Have you asked the doctors about it? That is your best bet but let some of the members give you their experiences.
Mentioned to my Doctor, who showed little concern, but will discuss further with the GP next week. I also intend to discuss with my physician at my next appointment, particularly that my toes are pale on going to bed, but in the morning they have good colour
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1 Reactionpollywater, I have had Raynaud's in my hands and feet for years. I agree, the doctor did not
seem overly concerned about it. My fingernails and toenails turn blue and they hurt. I have
to warm them up. Sometimes, just one hand will get ice cold and the nails turn blue. When I
warm it up, the natural color returns and the pain goes away.
Please be aware that sometimes, Raynaud's is secondary to another autoimmune disease like
Lupus.
Personally, I would go to a Rheumatologist and get a complete autoimmune workup done.
Praying for you. Blessings....
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2 ReactionsI have secondary Raynauds. Last week I waited too long to message my Rheumatologist about a flare. He doubled my medication and the symptoms on my hands and feet are better.
I suggest keeping your doctor informed if your gut tells you the symptoms are worse. It wasn't until his office called to set up a blood draw appointment that I left a message my fingers are perpetually blue and seven finger nails broke down to the quick.
In the past he's asked me to contact him when my symptoms get worse. I'm finally figuring out how important it is to contact the doctor when your gut is telling you something is very wrong. Although others don't understand the disease he does.
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2 ReactionsTexaslooms:
Diagnosed 45+ years ago with 2ndary Reynaud’s + 4 other autoimmune diseases which I just call MCTD. Understand very well about purple or multi colored hands and fingers. That said, it is very important to continue with f/u appts and inform dr of any problems as a good dr truly wants to help, no reason to suffer unnecessarily. There are also hand exercises you can do which I find help me but you need to do them daily and overtime you will notice a difference. Hope you feel better soon.
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1 ReactionI just saw this. I have numerous allergies to many medications. I have moved to Georgia from New Hampshire about 18 months ago and the first thing I noticed was how much more tolerable my Raynauds is behaving. I think the warm weather is helping a lot.
All my doctors were in Massachusetts as I lived right on the border. My PC doctor ordered from a compound pharmacy a vasodilating cream you only apply to fingers very carefully and you must wear gloves. The reason is it can get through the skin and get to your heart.
Yes,it was a pain to do, but it worked so well. Since moving here I have not been able to get it. It works by allowing blood to get through the vessels to the tip of each finger. It worked so well. It gets cold here for maybe 10 weeks but nothing like NH.
Maybe if you have not found anything since your post you might talk to your doctor. Some advice,not all compound pharmacist are the same. Be sure it’s very reputable. It was better than any drug prescribed for me.
mother Mary 1:
Can you please share the name of the cream the dr prescribed with the group. Thank you.
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1 ReactionSounds like typical Rayaud’s, although you don’t mention whether cold worsens—65f sets off mine, particularly outdoor excercise (blood flow is concentrated in major muscles). Try light gloves or sleeves pulled down, flexing hands—lifestyle management issue, not meds unless you have larger circulation problems
I just started LDN a month ago for an autoimmune skin disorder, and was very surprised when it significantly improved my Raynaud’s!
What dose LDN helped your Raynaud,s?