harrishill
Posted , 3 users are following.
Hi I believe I have asked this question before, but I am not sure what the replies were. I have Polycythemia Vera, and I am wondering if the Hydroxyurea I take for it, is causing my legs to feel like lead, and also leg cramps when I climb stairs. I have tried magnesium, am still trying it. So far, no results. I would like to know how many others have this problem? Otherwise, I may ask my doc to test me for Peripheral Arterial disease. I sincerely hope that is not my problem!!! Thanks to those who care to reply.
harrishill
0 likes, 6 replies
alma87921 harrishill1
Posted
Hi there
I have had this problem for about two years. I used to walk 4 miles every day but last few years can't really walk very far. I take magnesium 500 every night as it does help with leg cramps but doesn't stop them altogether. I never got them when I was walking regularly. I take hydrea every day but was hospitalised last November with severe anaemia and thought this was the cause of legs like lead. Despite taking iron occasionally the problem persists. I've had polycithaemia for 43 years and am 69. Hope this helps.
Alma
peter98873 harrishill1
Posted
I would suggest that Hydroxy is almost certainly something do with your leaden leg feeling. Some people do get this effect but it is not always prevalent. For some 14 years or so I took Hydroxy and suffered similar feelings but perhaps not so intent as you seem to get. Now I am on Jakavi (Ruxolitinib) much of this has disappeared but at night occasionally I can get milder effects of this nature. I have been through the vascular tests several times and I feel that Hydroxy has a lot to answer for here. Do you by any chance get sharp pains in your smaller toes at times, or even small ulcers ? I was also cleared of any peripheral vascular disease. Magnesium was never promoted to me as an option. What sort of dosage of hydroxy are you taking. Stay well and good luck.
Peter.
alma87921 harrishill1
Posted
Hi Harris I should have I take hydroxy 500 every day. I'm fascinated by Peters suggestion that this cd be the cause of the leaden legs . I've taken it for the past 15 years but only developed this about 2 years ago. My doctor has never suggested any other medication. Perhaps jakavi is very expensive ?? I live in Ireland and pay for all medicine. Peter is so knowledgeable. I find his posts really helpful.
peter98873 alma87921
Posted
If you have taken Hydroxy for that length of time then it may well be that the drug is not coping with your needs. Any drug can give less control after time, when one becomes more used to it. This often leads to bigger doses. Hydroxycarbamide has been used for the treatment of PV etc for many years now but can cause some severe side-effects. Jakavi is more efficient and designed specifically for the treatment of all MPN disorders. It can be expensive but a great deal depends on your local medical rules. I am not sure what you face in Ireland but Northern Ireland is of course within the UK and subject to the UK regulations. Some people do get by on Hydroxy provided the doses are modest. Best wishes.
Peter.
alma87921 peter98873
Posted
Hi Peter thanks so much for your reply. Clearly I don't ask enough questions when I see my specialist. I have had 9 venesections so far this year as opposed to 2 for 2017 plus I had 2 transfusions last year due to very low haemoglobin . It seems the bone marrow is really erratic . I appreciate your great knowledge and contribution to this forum.
Alma
peter98873 alma87921
Posted
Venesections generally form the initial treatment for PV following diagnosis. When the venesections do not control your symptoms then normally drug treatment will be introduced as these can better control platelets, white cell count and haematocrit. These are important features of your blood count. When you say that your bone marrow is really erratic I would ask whether you have been referred to a Haematologist for full blood tests and to check for a mutation of the JAK 2 cell (JAK2V617F) which will show how your PV may be progressing, if at all. I would have thought that this test would have been carried out before now bearing in mind your long time with PV. Generally drug treatments will be commenced with Hydroxycarbamide in small doses. Jakavi may be used much later.
Good luck.
Peter.