JAK2 result came back negative (phew!). I saw my immunologist last week and she thinks the polycythemia is being caused by the steroids I am taking and wants me to stop. So I'll withdraw from here with thanks to everyone who offered me support, it really helped. Small chance I may be back again if it turns out the drug wasn't the culprit, but let's hope not!
Just one thing I wanted to ask before I go...my immunologist said I shouldn't be having breathlessness with such high haemoglobin, but I thought polycythemia can cause that because of the sluggish blood flow etc? Am I wrong?
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Curlygal
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Pleased to hear that you may no longer be part of the 'MPN family'; however a small word of caution. I don't know anything about PV but for PMF for example the fact that you are Jak2 neg does not mean that you do not have the MPN in question (this was my case). Jak2 is frequent in MPN sufferers but is not the sole indicator.
Other members of the 'PV MPN' family will probably be able to give an more accurate opinion on this point.
Hi Curlygal, I agree with Crapaud, please check with your haematologist. We are all individuals so in your case that may mean you don’t have Polycythaemia. I am jak 2- but was told it means that I have Polycythaemia but with a different gene mutation to Jak2.
Hello, yes I know it's possible I could still have PV, the wait for haematology in my area is apparently 11-21 weeks so I doubt I will be finding out any time soon. Although if my Hct returns to normal after I stop the drugs that would probably be a good indication. Immunologist seemed to think I had gone a bit mad to be worrying about it (although I thought of pointing out the irony of asking someone with a rare disease, not to worry about rare diseases! 🤔)
Your haemaglobin might be near or within range but iron studies may indicate low iron. And that will make you iron deficient with the symptoms of anaemia. I think it goes with the PV territory. Exacerbated by venesections of course.
I would question the non MPN diagnosis simply because you are Jak2 negative But as you say, see what happens when you come off the steroids. Good luck!
I do have low ferritin although still technically in range (13). Bit worried I will become anaemic for real if my Hct drops suddenly, assuming steroids are the culprit.
Think the MPN thing is just the immunologist's opinion, which doesn't really count as she's not a haematologist.
As MPNs are cancers, the 2 week pathway should apply to a referral to a haematologist.
Thanks for the link (very comprehensive although it does make for sobering reading!) It does only seem to apply to London though? I've seen the local guidance and you only get the urgent referral if Hct is over 0.56. Also I do have a cause of secondary polycythemia. Realise there is a small chance of it still being PV though.
Glad results seem positive and fingers crossed your levels improve of the steroids. You can definitely be breathless with high haemoglobin as I found. Really hope everything goes ok for you.
Thanks everyone for your replies, I need to see the GP to find out if there is a plan to monitor my bloods and check Hct goes back to normal, and if she has contacted haematology. One annoying thing the immunologist also said was, she had got the letter from my GP-3 months ago!- but didn't reply because she knew she was seeing me in March. Seems kinda negligent, because my Hct was 0.53 and my GP needed guidance, not to mention how worried I have been. All she need have said is, I think it's probably the steroids but will review her when I see her. Check for other causes just in case. 🤔
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