Please excuse this post if it's super weird and nonsensical...Is blood itchy?? We (ET people) claim that itchiness is a problem, particularly after a bath/shower. It got me thinking...my bruises (all 200 of them!) are always itchy; that's generally how I discover them. Is it possible our blood is itchy, making the dilation/ contraction of blood vessels during hot water showers result in allover skin itchiness.....
Maybe I'm just raving but my bruises itch like crazy.
Karol
Someone else might be able to clarify this. I think it may have something to do with white blood cells congregating to the surface of the skin & that sends off other inflammation causing the itchiness.
Hi Karol. You are experiencing pruritus (proo-RIE-tus). It is a classic symptom of PV and very common...especially after a shower.I have it for 10 minutes after most showers. Some say avoid hot water . Mine goes away after a while. There are worse things so just try to live with it. If it gets bad doctors will put you on cortisones.
Thanks yes I'm aware of the definition and have 'just lived with it' for years! There are worse things like multiple thromboses which I've experienced....and lost two livers as a consequence. You misunderstood my query - I wondered why we get it, not how to solve it or treat it....
But thank you for your input, K
Hi karol, that itching is so horrible when it was bad for me I called it cruel. It led to me being diagnosed with pv via a long journey through dermatologists. I did find that once I started venesections and then Hydroxea it went away. Now for some reason it is back a bit. I was prescribed antihistamines to take 1/2 hour before showering, this did help. Keep your skin well moistened too. I hope it gets better. Mal
Sounds like classic aquagenic pruritis often found with PV. The combo of warm water and sudden temperature change is the trigger. Would wonder about your overall tx plan and whether you are doing phlebotomy. Wonder if the med choice is best for you. A gew things to help with the pruritis. Cool showers (yuck!). Topical medications such as Eucrisa. The supplement Turmeric-curcumin, which helps with a variety of the inflammatory problems driven by the JAK2 mutation. Hope tjay helps. All the best to you. FYI - you can also bathe in oatmeal. I much prefer to eat it with a pile of dried fruit, but itching really sucks!
Thanks for that, the itchiness isn't bad at all. I'm just trying to figure out why it happens...
Not on many meds except aspirin and warfarin, my blood counts are all exceptionally low right now...
There is always the possibility that it is an unrelated issue. I also have eczema, which is wjy I have a scrip for Eucrisa. Turns out the Eucrisa works for pruritis too. If you do not know your JAK2 status it is worth knowing. Yhe inflammatory cytokine realted issues JAK2+ can create are quite bothersome
Hi. I'm worried now because I'm meant to have ET and my haema is never interested in doing further tests but I have pruritus particularly with water contact. Also when I eat the wrong foods, e.g. oranges or juice or too many raspberries, strawberries. Should I be insisting on having further tests? ATB P.
Impossible to say whether this is MPN related or not. Sometimes our symptoms are MPN related and sometimes not. My old hematologist missed the progression of my ET into PV when it happened. He is a good doc who fired himself and referred me to a collegue who has more expertise in blood disorders. The distinction between ET and PV us based on rhe levels of erythrocytes (red blood cells) and leukocytes (white blood cells) in addition to your platelet levels. Thrombocytosis + elevation in another type of blood cell = the poly part of polycythemia. There is also a continuum of MPN disorders that are "unclassified." Somewhere imbetween ET and PV. Add to this the role your type of gene mutation plays. If you are JAK2+, then you may well experience elevation in your inflammatory cytokine load. This increased cytokine load is thought to cause many of the secondary symptoms people with the JAK2 mutation experience. Your basic CBC and test for the Jak2 mutation should already give you all of the info you need to review the above. This is very basic diagnostic workup for all MPN patients. Your doc should have already told you all of the above. This is very basic medical care for anyone with an MPN. If for some reason any of the above has not occured or been shared with you, perhaps you need a different provider. This is really basic MPN care. However, pay attention to what your pattern of symptoms means. It may be allergies in addition to or instead of your MPN. I know from my own experience this is really hard to sort out sometimes. MPNs are rare disorders amd most docs, even hematologists, do not have the needed KSAs. Add to that the need to get multiple specialists to actually talk to each other and sometimes sorting it out seems impossible. Suggest adopting the US Marine philosophy "The merely difficult will be done immediately. The impossible may take a little longer." The only way to get answers to your questions is to take responsibility to educate then advocate for your MPN and other medical care. Assertive educated patients get higher quality care. Passive patients do not. FYI - I am not a medically trained professional. My background is in Clinical Psychology. I am a MPNer just like you. Please invest in your own education regarding MPNs and tirelessly advocate for the care you deserve. I hope you get your answers soon.
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