Raynaud's: PV & Hydrea

[souplover]

I want to share my recent experience in case it's helpful to others. I've had Raynaud's since I was in my late teens, 60 years ago. I was diagnosed with PV in 2019 and have been taking Hydrea ever since.

Every winter, because of the Raynaud's, I get small painful sores that look like blood clots in my toes. They usually go away within a few days. This winter, those sores became extremely painful and inflamed, persisting for about six weeks. I was wondering whether the PV or the medication is exacerbating the Raynaud's or causing the lesions.

I've now gone to several different doctors. The answer seems to be that it's likely that both the PV are exacerbating the Raynaud's. Apparently, the hydrea slows healing. My hematologist prescribed a medication that lowers the platelet count, Pentoxyfillin. But this is only temporary, only for the coldest weather, because it can lower the platelet count too much.

I was also prescribed a topical medication, nitroglycerin paste, for the feet, to help stop the cutoff of circulation in the toes.

These two meds - plus staying out of the cold - seem to be doing the trick.

That's it! Just wanted to share in case it's helpful to others. Glad to hear whether others have experienced something similar.

[Toddyboo]

Thank you for this information! I have never heard of Pentoxyfillin and had to look that medication up. Appears its an anti-inflammatory and vasodilator that increases blood flow to an area. Also I never heard of using nitroglycerin paste to increase the circulation to the toes. Does that cause you to get headaches or have any other side effects? Thank you for sharing

[souplover in reply to Toddyboo]

no headaches. I'm not feeling any side effects to either of the meds so far. As I said, I will have to get off the Pentoxyfillin after a few more weeks because otherwise it lowers the platelet count too much. but the lesions (chilblains) were getting debilitating.

[Bluetop]

Thanks for posting. I have suffered from an extremely painful toe for the last 3 years in the winter. My figers and toes go white and numb. The rheumatologist advised that this was digital ischaemia, but not Reynards. However she did say she could prescribe me Nifedipine (used for high blood pressure -which I don't have-and Reynards). I had bought some battery operated heated socks, so she agreed I should give these a try first. So far, so good this year.

[souplover]

It sounds like Raynaud's to me, with digital ischaemia as the effect of the Raynaud's. It looks to me like Nifedipine is one of the meds used to treat Raynaud's.

I use battery powered hand warmers inside my mittens and it definitely helps. Had not seen the same for feet but I will go looking now!

What I thought might be helpful on this list is the connection with PV and with the meds.

[Auggie17]

So curious about your Reynard and the symptoms! I was diagnosed 5 years ago with ET Jak2+. I take Hydrea as well . I am trending towards PV but have no confirmed diagnosis. All my life I have had cold hands and feet and experience numbness in my fingers when the temperature goes below 50 degrees. In the last 5 years I have had numbness in my toes but no ulcers or burning. My fingers turn black on my palms but eventually it disappears. No doctor says anything when I tell them as I suppose they don’t know. Maybe someday I will find out that it is a part of having MPN. Best of luck to you!

[souplover]

It sounds to me like the same as me, underlying pre-existing Raynaud's, which is then exacerbated by the ET and by the Hydrea. Note that the scientific articles I found said that the effect of the Hydrea tended to occur after five years. Which is what happened to me.

Apparently, the Hydrea slows the healing process. Plus the blood thickening effect of the PV or ET.

Most doctors don't seem to know about side effects - and it's not life threatening so they tune it out. You kind of have to do some of your own work to bring it to their attention.

[Banjoswami]

me too, Raynaud’s since my teens. Hot thermos when I go outside helps warm my hands