Having previously lived in Spain, I am now resident in a beautiful part of France, with views of the Pyrenees in the Ariege. We had just signed for the house, and returned to Spain, when I started to get incredible itching after a shower. I knew our local doctor would say: ‘Well, it could be any number of things, from allergies to skin diseases’, so I prepared by searching on the internet and found a rare condition called polycythaemia vera.
The symptoms matched. A blood test seemed to confirm this and I saw a delightful haematologist in Spain who was very experienced. Follow-up tests included a scan to check the spleen (normal size), test for JAK 2 mutation, (positive) and a bone marrow biopsy;(not too bad). Initial treatment was phlebotomy to reduce the haematocrit and this continued for the next three years.
I am now being treated in France where Hydroxycarbamide is considered the appropriate treatment and they are not at all keen on phlebotomy, especially as my Ferritin level is pretty low. The treatment here is to control the leucocytes and platelets, but it is not so good on the erythrocytes, so my haematocrit is rather high. I will see the haematologist in Spain when I go back as I value his opinion.
I am keeping remarkably well, and have plenty of energy most days. The itching has subsided and only rarely upsets my sleep, for which I take Atarax. I used to need a little sleep in the afternoons, but not now. I take Coenzyme Q10 daily and, although I cannot prove that this has helped, I am convinced I have more energy since taking it. Incidentally, a few months after diagnosis I had a minor heart attack and had a stent fitted and received superb emergency treatment in France. I’ve had no problems since, but I follow a very low-fat and low-salt diet, take low-dose aspirin and statins, and keep my weight down.
Four and a half years on, all is going well, and I am optimistic. I love walking, including in the mountains, although I have to take my time on ascents. I also cycle a little, and enjoy swimming and Yoga.
Not too bad at my age of 72. I know I am very lucky.
« Go back