Connect
← Return to Raynaud's Syndrome: Anyone want to talk about Raynaud’s?
Discussion
Raynaud's Syndrome: Anyone want to talk about Raynaud’s?
Autoimmune Diseases | Last Active: Dec 25, 2023 | Replies (225)Comment receiving replies
I was diagnosed w/ Raynauds in 2008. At first, the flares were random and now every day. It has progressed from hands to also include my feet.
I was referred to rheumatology. I have only had one treatment that helped for a few months- Botox injections in the web part of my hand. Johns Hopkins rheum does this procedure regularly and I tried to convince my NC docs to do it- was only done once as “trial” and it made a tremendous difference in the intensity and frequency of episodes. It was not covered by my insurance so I’m back to wearing layers… my rheum did prescribe some blood pressure meds that help some folks, but those did not work for me given some low blood pressure issues I have.
Replies to "I was diagnosed w/ Raynauds in 2008. At first, the flares were random and now every..."
I have experienced Raynaunds for many yrs. with my UCTD . I have had to take blood thinner for another problem ,but as a side benefit my episodes of Raynauds are much less frequent even in winter months. I take Xarelto 15 mg. per day . I do not have a blood clot issue so I am taking Xarelto off label. Maybe it would help you ?
I’m so sorry to hear of your pain and other issues.
The first thing that popped into my mind when I read your note was “why are the medications that don’t work for you covered by your insurance, and those that clearly have benefit are not”. Hmmm....we have the same issues here.
Connect
Good morning @sonya_nc . I’m really sorry to hear about your hands and the difficulty finding/getting treatment. Have you checked with rheumatologists at major medical centers or university hospitals? Knowing that there is a treatment but you can’t get it must be so frustrating! What was the doctor’s response when you explained that it worked well for you?
Maybe you can find a hospital or doctor near you who can help.
https://health.usnews.com/best-hospitals/rankings/rheumatology
Explain about your insurance problem and maybe the doctor has some answers.
Have you tried talking with insurance?