Any advice

[vanlady]

Hi ,I was diagnosed with PV 12months ago ,i am taking Hydroxycomide and was having Venesections every month ,I have been feeling alot better, then the lock down ,my last appointment with consultant / Venesection was back in March ,and my next is July . My energy has gone right down ,my feet and ankles swelling ,my finger nails are very brittle with ridges ,I feel has if i have gone right back to the start .Any body else feeling this way . Vanlady

[harleydavidson]

Hi vanlady. I was diagnosed with PV 16 years ago and have the same as you but no swelling. I think the nails are to do with she lack of ferritin. Try to drink more water and move around as much as possible to improve circulation and speak to your team . Mel x

[john0084]

I'm in my mind fifties with PV take hydroxy and asprin. I have ridgee nails unfortunately this is the treatment goal of pv. They reduce our red blood levels making us iron deficent. can you contact your clinical nurse specialist mine is doing telephone consultations during lockdown.

[Kari1961]

Hi vanlady - I also have PV and take Hydroxy/Aspirin. My nails are also ridged and they split and flake, despite using nail oil on the cuticle. I now just keep them short to try to prevent them splitting. I've also noticed that as I haven't been going out for a daily walk since lockdown my right ankle and foot are swollen - On days when I do go out, it doesn't swell, so for me gentle exercise and a short walk is the cure.

Kari.

[Chaz1]

Sorry to hear you are struggling. Have you had your blood counts checked since March to know whether you need a venesection? The hospitals are still completing them so if you feel you need one before July perhaps be worth calling & seeing if they can help. My hubby's counts from March were a lot higher so he's been having venesections monthly during lockdown rather than quarterly & he says the precautions at the hospital are really good.

[Ebot]

Interested to hear about the ridged nails. I’m not iron deficient (and when I was my nails were fine!). My nails were awful a while back and a couple had deep furrows (which I assumed was the result of some kind of trauma). I’ve been trying to use plenty of oil which has improved things. Having been a bit alarmed I then just thought they had got super dehydrated. Or I’d got prematurely very old! The constant handwashing isn’t exactly helping matters!

[hunter5582]

I also have PV, though I am on a venesection-only protocol. I cannot take HU as I am intolerant of that medication. It certainly does sound like you need follow ASAP as to your current status. It can be tricky to sort out what is the PV, what is the meds, and what is the iron deficiency. What you describe may be a combination of all three.

Iron deficiency can cause changes to the nails. Iron deficiency can cause anemia-induced fatigue (which is not the same thing). PV can cause fatigue as well. HU can cause changes to nails/skin, asthenia (fatigue), and edema.

Since you note you have been off your treatment protocol of monthly venesection for three months, that may well be playing a role as well. Those of us with PV really cannot let erythrocytosis go uncontrolled. If your HCT is too high, that is likely more dangerous than risking exposure to COVID by seeking appropriate treatment. Suggest getting a CBC ASAP. If venesection is indicated, take due precautions, but get it done. I am due for my next lab and venesection soon. Both are done in free-standing settings rather than a hospital setting. If necessary, I would go into a hospital setting.

Hope you get answers and relief soon.