I have had Reynauds for about 8 years. Despite wearing insulated gloves, having hand warmers etc I still get cold painful fingers. I've been offered medication but they don't work or the side effects are worse. The only relief I had 18 months ago was when I was receiving FCR for my CLL and miraculously my hands were fine. Any one else have Reynauds? Any recommendations? X
Treatment of Reynauds: I have had Reynauds for... - CLL Support
Yes I know how you feel... I'm suffering all the time with painful finger's(Raynauds). I like you have tried everything but it still continues. I've just got to touch something slightly cold and it starts. I'm on treatment but it hasn't helped it at all.
What treatment are you on? I'm back on Nifedipene but on very low dose hoping that I can tolerate the side effects. X
I've been on Acalabrutinib since beginning of September.
Hi Floxxy, I also have raynauds but fortunately as I live in a warm climate it is not too bad, winter months are worse, I know how you feel, I usually run my hands under warm water when I need to, hope you find some relief!
Floxxy, because your Raynaud's symptoms went away during FCR treatment your symptoms may be caused by cryoglobulins produced by your B cells. Have you been tested for cryoglobulins?
Here is a link to a post I made a while ago in response to a question about cryoglobulinemia
PS, sorry I don't remember how to correctly post a link to a previous post.
Have you ever tried a far infrared heating pad, or far infrared sauna? I don't have Raynaud's, but I have extremly low blood pressure & often have cold feet/hands (not painful, just cold). It works like a charm for me, and a neighbor of mine with CLL was recently introduced to far infrared heat & loves it.
Hi i have raynaulds or similar. Suddely came on five years ago.When the temperature drops in winter the whole of my feet go blue,though the toes are worse. I dont have the white blanching.Sometimes it stops me going off to sleep and i use hot packs. It can take an hour or two for the pain to go.
With regards to my hands i cant handle frozen foods for long.
Luckily being in Australia our winters arent too bad.
I am high count mbl.....i did have a special aggluten test which was negative.
I have shown drs pics of my feet but of course they dont get to see them when blue.
I find that thick socks and a hot water bottle help keep my feet warm. My hands are more of a problem and wear gloves in bed a great deal of the time. X
An electric blanket is comforting. I have problems with cold feet. Once they are cold I have trouble getting them warm. I put it on high to warm the bed quickly and if you have a problem the blanket can be turned to low and left on. I know its not a cure but anything helps. Anne uk
I also have was told I have it but my hands don't change colors, just my feet and they will sometimes go blue or purple. I on one hand am fortunate because I live in Florida and winter really isn't much of a thing here for us, but on the other hand, we live in air conditioning so my hands and feet are ALWAYS cold! I wear thermal socks year round and run my hands under hot water at work and sit on them when I can. I am in W & W so no luck with treatment side effects yet. I hope you find something to help you, as this is most miserable!
I had terrible Raynauds 4 or 5 years ago. The consensus of opinion was that it was autoimmune, I had severe ITP as part of my CLL. Nothing really helped except trying to avoid the cold, rather difficult in the UK! Then I developed another autoimmune disorder called myasthenia gravis which affects neuromuscular junctions. Part of the treatment for this is high doses of steroids. The Raynauds has disappeared. The next phase of treatment has been rituximab combined with venetoclax. The myasthenia is improving and the steroids are being reduced. It will be interesting to see if the Raynauds recurs.
Good luck, John
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