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Sore joints - urea serum related

Hi all,

Sorry for posting, yet again, with a minor ailment complaint - but I reckon everyone here is in probably the best place to advise me :-)

I started on dasatinib 10 weeks ago, after switching from imatinib due to intolerance and a suboptimal response (4 months on imatinib). Anyway, the dasatinib seems to be working ... PCR down from 76% to 4% in 10 weeks seems pretty good to me, but it has left me with sore joints. I'm only 34, so it's not an age related thing! However, my blood urea serum levels are up - around 450. My consultant seems pretty sure that this is the cause of the sore joints (ankles, mainly, followed by knees and gets better as gravity reduces!) and suggested allopurinol to deal with it. When on hydroxycarbamide I took allopurinol because I presented with a pretty high (320%) PCR and had no issues with it. All the same, my consultant thought that allopurinol is the kind of thing you take, and stay on for a long time, and along with omeprazole and dasatinib and betahistine (for another problem) I am loathe to take on another "lifetime" medicine if there's an alternative. We agreed to look at it again in a month, more in the hope that it sorts itself out to be honest.

Has anyone got any experience with this problem? Is there anything that can be done to help it, without resorting to the medication? I already use topic I magnesium for some moderate muscle cramp, and that does the job for that. I'm hoping someone has a similarly good trick up their sleeve!

Thanks, as always -
David.

Hi David,

Sorry, I can't help with your question but I just wanted to say congratulations on the PCR results - 76% - 4% is a massive drop.
Hope you manange to sort the joints out soon!

Sarah.

Hi David,

I was diagnosed with CML less than 3 months ago.I started on imatinib but switched to nilotinib after a week. I was also prescribed allopurinol but only for the first month, while there were loads of leukimic white blood cells being broken down, to avoid a build up of uric acid and sore joints.
In the first month I had some bad pain in my hips but it stopped after a few days and I had no problems since.
I don't think you will need to take allopurinol for life -hopefully a short course should be enough, but I suppose it will depend on your urea levels.fingers crossed!
I'll have my first PCR after diagnosis in less than 3 weeks- I really hope it will be as good as yours.

Best wishes

Luisa

I am not sure at all that you would need to stay on allopurinol for a 'long time'. When I was started on imatinib I was given allopurinol to cope with the high number of cell die off in the marrow. My initial white count was only in the 50's by the time I got to take the drug, Dr. Druker expected that there would be a high cell death rate and I assume these would have been in my marrow- I only stayed on it for a month.

I think you might see an improvement soon as the cell population reverts to normal (non PH) cells- you have had such a fast response it is not surprising that your joints are painful.

I think you might do well to talk with your doctor again- another short course might do the trick.

Sandy