Polycythemia

[James53]

Hi

Have PSA and treated by Benepali.

Just been advised I may have developed polycythemia! This was picked up via blood tests showing increasingly high packed cell volume (red blood platelets). Waiting to see haematology. Seems one treatment is regular blood removal by phlebotomy.

Anyone on here had similar condition?

Thanks

[penelopejane]

Yes. Polycythaemia vera was picked up almost 2 years ago after a sudden weight loss and worse than usual fatigue. No reason really known for this condition which is not curable. May be linked to methotrexate, so I have been told. Could also be caused by autoimmune problems, rheumatoid or humira. Or just bad luck. Who knows. I have vivisection (blood letting) ,which is similar to normal giving blood, every 2 - 3 months to reduce haemoglobin and red cell count. The problems I suffer are not dreadful, itchy skin, some unexplained bruising, slightly worse bleeding when cut, some headaches and night sweats. After enduring RA for several years these problems are very minor. However, my haematologist phones me every 2 months which is a bit worrying. I believe this is due to the higher risk of heart attack and stroke which are already a higher risk due to RA. At least she is keeping an eye on my condition. I quite enjoy the attention. At present I take 75 mg aspirin daily. Other drugs have been suggested, but I intend to resist these, unless absolutely necessary.

I hope this helps with your visit with haematology. I suggest Leukaemia & Lymphoma Research website for more information.

Keep my fingers crossed for you. It seems so many of us RA sufferers get something else. Hey ho we will keep fighting on no matter what.

[James53 in reply to penelopejane]

Thanks ever so much for your helpful reply. Best wishes to you for the future.