Raynauds and high platelets

[Stanley28]

Hello - I have ET and am on aspirin. I have recently developed Raynauds syndrome (my fingers become very painful and turn white, red or blue). Although it is described as a winter condition, i am getting flare-ups in the summer. the syndrome as been described to me by the rheumatologist as a manifestation of my high platelet count. has anyone else developed Raynauds in later life (normally it manifests before the age of 30) - and any advice on how to manage it?

[AndyT]

I have ET and certainly get more noticeable white, cold fingers in the winter. I have to wear gloves as soon as the temperature starts to dip. Oddly it’s not any better since my platelets have been brought back into normal range.

[Wyebird]

Hi I’m ET Calr I’m fortunate I haven’t suffered with Raynaud's. I have muscle ache. I thought at first it was working out and using muscles not familiar with exercise. I’m now convinced it’s not so. After not working out for weeks I still have those aches. I walk like some 80 year olds and I’m 62 and have always lead an extremely active life.

[Splb3317]

Hi Stanley,

Yes, for several years now, I've developed a Raynauds type problem in 1 finger. It comes, even if I put the finger under cold water and is really painful. I have PV since 2015. I've mentioned it to my GP, who says there is a treatment, but I gather the treatment can be more problematic than the disease. But, I only have this in 1 finger. My sister has had Raynaud's for years (she doesn't have an MPN) and swears by a warming element of some kind that she puts in her gloves. I don't mean an electrical element! You would certainly find it on line.

All the best

Sandra.

[Tinkerbell13 in reply to Splb3317]

Hi Sandra, really interested to read about you, as for years have had such pain (comes and goes, sometimes lasts for ages) in one finger, and also spreads to other fingers and even hand, but always excruciating! Always if get cold, but other times too. Have ET. Whether platelets high or not, still affects me. Doctors all seem puzzled. Doesn't necessarily go white, or red, but as I tend to clutch it with other hand, when pain is so bad, that tends to make it red! Going to have vascular ultra sound in arm to check blood flow, but doctor says we might never know cause. Best wishes, Tinkerbell

[JackLina]

Yes. In fact I have it now and it rarely goes away. I have white patches and purple patches and my thumbs are the most painful at present but hands virtually useless.

[Meatloaf9]

Hi, I am ET and Jak+ I began to notice my hands turning white, blue, green this past winter. It is less not that the weather is warmer, but has not gone back to normal, suppose it never will. Good luck to you.

[TerriR]

I'm having issues with bluish toes (& a bit in fingers) with some achiness when it occurs. But, I don't get the white phase typical of Raynaud's, although my doc thinks it's a form of that. My platelets are running normal now on Hydroxyurea, so I don't know what's really going on. I'm told (& read) blue toe syndrome happens with high platelets. I have been referred to a vascular specialist. So, we'll see. In the meantime, following replies to your question...

[billybrock]

I developed Reynauds some years ago before I was diagnosed with MF. I was experiencing cold hands and feet. I was prescribed Nifetepine, which dilates the arteries serving the extremities.

I still take it and it appears to relieve symptoms.