Raynauds

[Joan59]

Hi I have had Raynauds for the last 18yrs secondary to SSc and last week my Rheumatologist diagnosed that I now have it in my tongue, it either goes white or blue. I have never heard of this happening before? Any thoughts.

Best wishes joan

[pino99]

Hi Joan,

Yep, tongue Raynouds is a thing. I have had it in the past, but only at my worst. What meds are you on? I am now on 25 mg losartan and 75 mg aspirin, which are controlling the attacks quite well. I also had sildenafil when I was at my worst.

Best wishes,

Pino

[Joan59 in reply to pino99]

Hi Pino sildenfil didn’t work for me nor losartan still had symptoms in the summer on these. I was on Adalat for swallowing problems which actually helped a little but I had to be taken off these because they were making my legs swell a lot. I have also tried iloprost for years. At the royal free but on my last visit for this I had a massive Bleed so they won’t give it to me. So I am not on anything at the moment.

[pino99 in reply to Joan59]

Tough one. Maybe just some aspirin may help, although if you have had a bleed they may not want you on it either. Other than that, is the old keep warm. I always wear somw kind of scarf around my neck and keep my wrists warm as the body temperature sensors are located there.

Best wishes,

Pino