Bones

[StreetPastor]

My bones crunch and click and are so painful (pain scales 6-9 all the time). Anyone else get this on med's and didn't before? 4am and up again!

[jane13]

hi, i have similar symptoms - not so bad thank goodness. my haem has finally admitted that you can get bone pain from mpn but says my pain not due to mpn as my counts are well controlled, so i now have a referal to a rheumatologist to see what they think. not sure if this helps you

jane

[Hidden]

II have these symptoms too but before I had my diagnosis. When I was put on hydroxycarbamide, my pains started to subside after about three months. However I still get prolonged spells from time to time when the pains return, despite my bloods testing as normal. I have "clicking" from my hip most of the time. My haematologist did not think it was connected to my PV but I am not so sure. Because of the drastic improvement in pain when I first started on hydroxycarbamide and given that I had been suffering pain and stiffness and leg pain for a considerable time before that, I feel it IS connected, but to my illness and not the treatment. I have now stopped discussing this with my haematologist as she has told me nicely that her job is to normalise my blood counts, which she has done to great effect and I am worried that she might think I am making it up. For what reason I don't know. I have had other referrals, to gastroenterology etc because of stomach ulcers, which are now, with treatment, healing and so my bone pain still remains on the list of things that are sent to try me. I hope eventually to get each thing dealt with and then achieve a better quality of life. Goof luck with your rheumatology investigations. Let us know how you get on. Feedback is everything.

[Hidden]

Sorry - I said "Goof" luck. Of course I meant "Good Luck". I should have read it over. Ha, Ha. I am the "Goof".

[Ginnyhelen]

Hello,

I have ET and take Hydroxycarbamide. Not sure if this helps, but I have found that the white capsules cause me quite severe back pain, but when I went back to the pink and green capsules it all went away! My haematologist was a bit surprised but didn't dismiss it and now I only have the pink/green capsules - fortunately I have found a pharmacy who is able to get this brand for me.

Good luck and best wishes.

[Mwalimu]

I had bone pain before medication - jaw, pelvis as well as 'twinges' in head. Since medication, jaw and pelvis pain has gone but still get the 'head' twinges. Personally, I think too many of us on medication have bone pain for the haem to be right that well-controlled blood counts in case of ET, means no bone pain. Hope you can get some help and life becomes a bit better for you.

[Marie95]

Hi Streetpastor

I have had bone pain since DX of Et 4 years ago, when on hydrea it was worse, as stiff joints and shooting pains joined in travelling up my legs, Hem wasn't interested(the usual story!) I then found out others where taking magnesium and Vit D, and what an improvement, its not perfect but its 50% better, when I stop taking these, it returns, the hips pains especially, I hope this works for others, just check with the Doc beforehand.

[Aime]

Hi, sorry to hear you are in pain. My bones, tendons etc have been like that for years and steadily getting worse. Not on meds for my PV. Best wishes Aime xx

PS have found the hydrotherapy pool helps greatly with bones but of course it annoys the itch.xx😺