I had a reaction to ? Hydroxycarbamide. I am a Polycythaemia Vera patient. Where do I go from here?

I was doing well on Hydroxycarbamide after being on the treatment for 21 days. Then I developed a Blue and numb left index finger. I attended my GP Practice who tried to get me seen by the Haemotology department, They however said that I had to go to A&E. after being seen by 1) a Vascular Surgeon, 2) a General Surgeon, and finally 3) a Medical Consultant whilst being kept over night in the Assessment Unit. I was eventually Discharged to the care of the Haematology Department that my GP tried to refer me originally! My diagnosis being Hydroxycarbamide induced Vasculitis. My Hydroxycarbamide has been stopped but at this stage I have not been told what direction my treatment is to take. It has shook my confidence somewhat Anyone had similar experience?

5 Replies

  • Hi AiIRow Im sorry to hear your spell on Hydrox has been dramatically cut short as most peops seem to tolerate it reasonably well with mouth ulcers being a main side effect which generally are'nt severe enough to be taken off it. I have been on it 6 yrs and apart from occasional red cell top up Im lucky it works for me. But I know there are forum members who have been taken off it for various reasons but I havent heard of it causing your Vasculitis before. It sounds nasty and I hope it wasn't too painful.

    What a rigmarole your hospital appt was. We have a day unit in our Oncology and if Im feeling rough I can ring through and pop along for bloods thereby bypassing GP or AandE.

    I'm a tad surprised no alternative has been suggested for you but I guess they need the Vasculitis to clear up before starting you on something else. Don't be put off by your experience because you've just been very unlucky and don't be afraid to go back to your Hem if you don't hear anything soon as there are alternative drugs to try.

    Good Luck

  • I sorry for the delay in replying to your answer to my Blue finger saga. I have direct access to the Haematology Centre also. but at the time of my incident I was not sure that it was an haematology issue (hind site is great). I also have my own specialist nurse too! Since this instance I have had much in depth discussion with both the specialist nurse and my Consultant. I cannot see this sort of thing reoccurring.

  • Hi, I often get numb fingers but it doesn't last too long, the worst is my right thumb but I just feel it is something else you have to live with. I have so many other pills to take for heart problems that I expect odd side affects!! Wish you well Elsie x

  • After a bit of a long and convoluted journey I have had some light shined onto my blue finger syndrome. However, because it was documented that the most probable cause was Hydroxycarbamide, I will now be commenced on some other treatment (probably Interferon).

    Anyway, The Blue Finger Syndrome has a quite detailed paper written about it. The study covers a group of 22 patients who presented with this symptom 15 female and 7 male. The paper is titled "The acute blue finger: management and outcome" . This piece of research

    concludes that it is unlikely that I should have a reoccurrence and that it is not thought to be a precursor to other issues.

  • Eat raw garlic twice a day.

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