Leg Cramps
Posted , 9 users are following.
My husband was diagnosed with pv in March when he was sent to the Emergency room due to very high blood pressure. they ran many tests and was told he had suffered 3 mini strokes due to the thickness of his blood (PV). He goes to the Hemetologist and has regular Phlebotomies. Also taking Hydroxia. He has developed in the last couple of weeks severe pain and cramps in his calves when he walks and at night. Has anyone else had this?
0 likes, 9 replies
angela_o..o laura32252
Posted
Hello laura,
I don't know anything about leg cramps but I have bumped up a discussion which was started by Harrishill some time ago on a similar sort of subject.
Scotslassie laura32252
Posted
I also have terribly painful arms and legs.
I was diagnosed 5 years ago and take 500 Hydrea once a day
harrishill1 laura32252
Posted
Hi Laura. Yes, recently, actually for about almost a yr now, I have been getting leg cramps when I go for a walk, I have walked all my life, and have been on Hydroxyurea for PV for six yrs now. However, my hematologist has raised my amount of capsuls per day ovder this last yr. I looked it up online, and a side effect of Hydroxyurea is leg cramps. I really hate it, but I don't want to change my medication unless it gets worse. However, I have quit walking because it is very painful. I still work out on machines at curves (mostly leg and arm weights. I have also been painting some walls to help out someone, going up and down a ladder
and was a little sore, but not too bad. So I've found other ways to get exercise.
harrishill
peter98873 harrishill1
Posted
Sorry to read that you are still suffering. Like you I took Hydroxycarbamide (Urea) for many a year before I had to come off. Leg pain was one of the symptoms that troubled me but that is but part of the problem. I was prescribed Ruxolitinib and have been on it ever since, over two years now. It is far easier to live with and really I feel considerably better. The leg pains are no longer giving me any difficulties. I take a minimum dose of this drug whereas with Hydroxy I felt I was working for the pharmacy. I took far too many and ran out of steam on this. I know you are in USA where drugs are prohibitively priced but if you do get the chance to try Ruxolitinib (Jakavi trade name in UK) I would expect you to find it as beneficial as I do. I cannot return to Hydroxy.
You seem to be doing all you can to help yourself so good luck and best wishes.
Peter.
tavga90904 laura32252
Posted
peter98873 laura32252
Posted
Leg pain is a known symptom of PV and can also be caused by some drugs used in its treatment. Does your husband take aspirin or other blood thinners? He is already under the care of your haematologist which is essential for him. I note he is a newly diagnosed PV patient and his treatment is still being assessed I would say. If you become anxious about his symptoms do not hesitate to seek your haematologists advice. It may take a little while to settle things down but most people seem to find a satisfactory level. His two treatments will be recognised by most PV patients with this disorder. Best of luck for the future.
Peter.
Mary1000 laura32252
Posted
While searching this forum for information on Polycythemia and leg cramps, I found your posting. I do hope you husband is better! My spouse was also diagnosed with PV and suffers from intense leg cramps, especially during the night. I am wondering if this issue has been resolved for your husband. If so, how was he able to overcome the spasms? Do you know if they were caused by PV or some other issue such as dehydration or a nutritional imbalance? Any insight from you on this nagging challenge would be greatly appreciated.
Thank you kindly.
Mary
Mary1000 laura32252
Posted
While searching this forum for information on Polycythemia and leg cramps, I found your posting. I do hope you husband is better! My spouse was also diagnosed with PV and suffers from intense leg cramps, especially during the night. I am wondering if this issue has been resolved for your husband. If so, how was he able to overcome the spasms? Do you know if they were caused by PV or some other issue such as dehydration or a nutritional imbalance? Any insight from you on this nagging challenge would be greatly appreciated.
Thank you kindly.
Mary
jane5263 laura32252
Posted
yes, hello Laura I'm new here I have new symptoms of PV and leg cramps have been a part of my symptoms for a couple years however I'm not taking medications, they say hydration is mostly the cause and low magnesium, so a supplement can help especially at night.