I was d/x way back in 2004 with PV and following quite a few years of regular venous sections, I was then put on Hydroxy to regulate my blood counts. However, I’m noticing all sorts of stuff going on which is beginning to cause me concern. I now bruise like a peach and get, what I call, those old lady red blotches on my arms in particular. Knock them and they bleed like anything.
My finger and toe nails are so weak and thin and split vertically which causes all sorts of problems. My hair’s thinning too. I also get what I call long bone pain particularly in my lower legs plus burning feet at night. All in all, I’m fed up with it all. Do I need to change my meds? Or stay with what is? Discuss! Much love Poll xx
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Polly-PV
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Sorry to hear about the progression is symptoms. It sounds like a combination of PV symptoms and HU adverse effects.
HU adverse effect include the issues with nails and thinning hair.
PV issues include bone pain, burning feet (possible erythromelalgia).
Bruising and bleeding issues may be either from the PV (if thrombocytosis is evident) or from the aspirin or other blood thinner you are taking. Suggest you also look to see if you are thrombocytopenic, which could cause the hemorrhaging but would require a different intervention. It would also be appropriate to do a von Willebrand Panel.
What you describe indicates a clear need to a change in treatment plan. Suggest that you meet with a MPN Specialist to discuss whether Besremi (or Pegasys) or Jakavi would be more suitable. Likewise, your antiplatelet medication should be reviewed and other options considered.
Please do let us know what you learn and how you get on.
I would agree it’s time for a expert review, I would pay most attention to the bone pain, the other symptoms you mention are likely the HU and will likely sort themselves if you stop HU, bone pain means something going on in the marrow, changing to Peg or Rux will hopefully sort that. Try and see an expert if you can who can check what’s going on, set direction and hopefully from time to time keep you and your local Haem going in the optimum direction
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Aspirin or not Aspirin that is the question
Is ET the same as PV?
Have I progressed to PV?
ET or RT, that is the real question?
