PV Bone Pain

[ktd1955]

Hi anyone with PV, I was diagnosed 2 years ago and have been on hydroxycarbomide, however the bone pain is worsening especially at night and I was wondering if this was just part and parcel of the condition or what if anything can be done. Going to the forum in Leeds on Saturday, may find out something there. Karen.

[Sksarj]

Hi Karen,

I have ET and will be at the forum in Leeds on Saturday too. It would be nice to hear what the experts say about bone pain as so many people seem to suffer from some form or other with an MPN. Up to now I am managing my pain at night (doesn`t bother me in the day much at all) by attempting to keep my leg cool when the pain starts. Using very cool cotton sheets helps and if that fails sticking my leg out of the covers altogether usually does the trick and I can get back to sleep. I am of the opinion that my problem is a mild form of erythromelalgia, but that has not been confirmed by a doctor. Maybe we will bump into one another at the forum.

Regards Sue

[ktd1955 in reply to Sksarj]

Thanks Sue, I agree, during the day when I am busy at work it doesn't seem as bad but when you are trying to sleep it does keep me awake most nights now. See you at the forum.

Regards Karen

[MarybellM]

My husband has PV and also suffers from bone pain. He was on hydroxy as well for a while but was taken off it at the last consultation. It's hard to work out cause and effect, but he thinks the bone pain started when he stopped the drug. There must be some connection between the drug, the PV and the bone pain - I'm just not sure what! There are lots of questions with this illness but this forum helps provide a place for discussion and possible answers. To alleviate the pain he uses a little square heat pad like a mini electric blanket. (I like it too and find it comforting so we share it!) We got it in Boots and it heats up very quickly. My husband gets 6-weekly blood tests and a follow up telephone consultation with a haematology specialist nurse. He's had various treatments - aspirin and lots of venesections for the first few months, then the hydroxy for a while. Who knows what the readings and levels will lead to next week? Meantime we are both doing our best to live a normal life - it's amazing how resilient we are as human beings once the initial dust settles. Good luck.

[tuffetgal]

hi ktd1955 please keep me posted about the forum in leeds. i too was diagnosed about two years ago but suspect i had it for years, as my platelet count has been over 800 for four or five years, i just didnt pursue it til two years ago. i have occasional bone pain, mainly in my left hip and mainly at night. as i sleep on my side most of the time, that may aggravate it. i usually take extra strenght tylenol and it lessens. i am not on hydroxy due to my hypersensitvity to most drugs. so please share whatever you learn, i am all ears and good luck

[Essexdoll]

Sorry to hear this Hun! So far, I've not experienced bone pain, but hope you find some way to get some relief! Please let us know if you do! Wishing you kind days my lovely!! Xxx😘

[ktd1955]

Thanks to everyone for their replies re bone pain. Having attended the forum at Leeds on Saturday this was one of my questions to Alison who was leading our small group of PV patients. I was surprised no-one else seemed to suffer from it but I did say it was much worse at night, will try paracetamol as suggested and see if this makes a difference, if I get one night's sleep I will be glad. Lovely to see so many people at Leeds with our very complex blood disorders!