Does either PV or Hydrea exacerbate Raynaud's?

[souplover]

I'm wondering whether there's any connection between either Polycythemia vera or hydrea with Rayanud's? I'm experiencing quite painful and very persistent blood clots in one foot, that just will not let up in cold weather. It can be so painful that it keeps me up at night. It's never been this bad before. Do any of the rest of you have similar experience?

[souplover]

I just want to add that I've had Raynaud's for decades. That's not new. But the symptoms have gotten much more severe, which is why I'm thinking it could be related to PV or HU.

[lynnieb in reply to souplover]

I have ET and really struggling with icy cold extremities. I don't have Raynaud's as far as I know, but am awaiting a vascular appointment. My toes and go purple sometimes, especially in my right hand which is paralysed. I think there MUST be link

[souplover in reply to lynnieb]

It totally sounds like you have Raynaud's. See Hunter's forward of info about secondary Raynaud's.

[hunter5582]

I believe that in some cases secondary Raynaud's syndrome may be associated with PV. merckmanuals.com/profession...

I experienced something similar, cold intolerance/cold hands feet when my iron levels were very low. It resolved when my iron levels improved.

Suggest you review this issue with a MPN Specialist for the best input on how to handle it.

[souplover in reply to hunter5582]

In my case, the Raynaud's preceded the PV by decades. But seeing that PV can actually cause Raynaud's, it makes sense to me that the PV might be exacerbating the Raynaud's.

[hunter5582 in reply to souplover]

I would wonder if the Raynaud's was a prodromal sign of the PV. Please let us know what you learn.

[souplover in reply to hunter5582]

I first noticed the blood clots in my feet, which were later diagnosed as Raynaud's when I was in my late teens, about 50 years before the PV.

Having looked at the link you sent to the Merck Manual, about secondary Raynaud's, I'm thinking that in my case, the PV is exacerbating the pre-existing Raynaud's. It can lead to permanent damage to tissues, by the way.

The hematologist is thinking about adding Plavix. Any thoughts on that idea? I see that it can make you feel very tired. I'm thinking, oh great, how's that going to work, on top of the fatigue from PV?

[hunter5582 in reply to souplover]

The only way to know what the adverse effect will be is to try. In the situation you describe I would certainly take the doctor's advice to give a more potent antiplatelet medication a try. If you and your doc decide to move forward with this plan, please let us know how it works. Others will benefit from your experience.

[souplover in reply to hunter5582]

I definitely will post my experience.

So far, the hematologist suggested it might be the Hydrea - and I do see that one side effect is ulcers on the skin.

And the cardiologist thought it might be the PV. And you pointed out that PV can even cause Raynaud's.

Confusing! I suppose it's even possible that it could be both of them?

[hunter5582 in reply to souplover]

It is quite possible to have co-occurring conditions with overlapping symptoms or experience exacerbation of symptoms. If you are experiencing ulcerations, that would be a significant concern as it is a severe adverse effect that indicates a need to discontinue the HU. Note that HU can have other adverse effects on the skin as well as causing peripheral neuropathy. Your hematologist should be alert to the various side effects related to the medications you are taking to treat the PV.

Wishing you all the best.

[souplover in reply to hunter5582]

Thanks! Which is the medication you prefer instead of HU?

[hunter5582 in reply to souplover]

I have responded much better to Besremi. More effective and easier to tolerate. Jakafi is another good choice for some.

[souplover in reply to hunter5582]

Thanks, let's see what she says next week.

[Nan14 in reply to hunter5582]

Hi Hunter, thank you for sharing the attached article. As a newly diagnosed PV patient I have found it really useful and it will definitely help me plan for my 1st follow up appt a haematologist next week.

[Mandz12]

I have had raynaulds and lupus for about 20 years now and have pv but never had blood clots contact your doctor at the hospital .

[souplover]

yes, I have contacted hematologist and cardiologist. I seem to have severe Raynaud's.

[william-Indo]

It is related to iron deficiency.Pregabalin may ease the pain and take it when need only

Cheers

[souplover in reply to william-Indo]

I’ll look into it. I’m due to see hematologist next week so I’ll see then about iron.

[Minify]

I’ve had Raynaud’s for decades (severe peripheral arterial constriction in response to cold), but never had peripheral arterial clots. If you are indeed clotting, Plavix sounds like a good thing to try. Are you already on aspirin?

[souplover in reply to Minify]

yes I am already on daily aspirin.

[Wendrew]

yes, I’ve had reynauds for decades and the PV/Hydroxy only makes it all more uncomfortable. I’ve found silk glove liners help fingers but not too much helps feet

[ALlady]

My frigid feet have never been called Raynard’s but I know the problem has gotten much worse since my PV diagnosis. My right foot especially is cold and painful. It seems to get colder at night when the rest of my body is toasty warm in my flannel sheeted bed.

[souplover]

when you mention pain, it sounds like Raynaud's.