Would like some advice please, I have been taking 400 mg Glivec since first diagnosed in 2002, have been in remission for about three years,I discussed with my consultant in Oct last year that as I had been having urgent diarrhoea which had been getting worse I should try coming off Glivec to see if that was the cause, the diarrhoea cleared up as soon as I stopped Glivec. I still have regular blood tests and bone marrow biopsy. But since then have had quite a lot of bone pain,first hips,upper arms and knees, particularly upper arms, which means I cannot sleep well.
I would like to know if anybody else has experienced this after stopping glivec, it is posible that I am getting rhuematic pain, but strange it only started when stopping the drug. I have found this site really helpful over the years,even though I haven't posted often. look forward to others views. many thanks.
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Stopping Glivec
I have been off Gleevec for 19 months now. The disappearance of the side effect were great. Mine was mainly very puffy eyelids and easy bruising. Generally I felt much better physically and mentally.
Last December I started with lower back pain which seems to come and go. As I am now 66 years old I feel this problem seems more related to rheumatic pain than a Gleevec side effect.
As time passes the stress of the PCR outcomes seems to become the bogeyman. But I am quite prepared to resume my TKI regime should the need arise for I know the drugs work with me. Hopefully I have achieved a level where my natural immune system can suppress any CML activity.
Good luck with your trial.
Thank you Basil, helpful to know somebody else is successfully weened from Glivec, though I am not knocking it as I know it has been a life saver for me, though the fact that bone pain started as soon as I stopped Glivec, seems strange. I am older than you, so could also be the aging process! best wishes. Cynthia P.
Thank you Sandy,
As always you come up with helpful comments,I have had a blood test from the Dr, which shows normal readings, although he may not have been testing for low magnesium levels, I have now got magnesium oil as you suggested, also taking Calcium and magnesium tablets. Thank you Cynthia P
I developed lower back pain about four years ago, about the same time as I started on Gleevec, although it might have been there earlier - can't really remember I am now 65. The initial cause was a prolapsed disc, nothing to do with Gleevec. I have had three caudal epidural injections. The first two worked for about 18 months each and the last (recent) one didn't.
About four weeks ago, I had lumbar facet joint injections which worked remarkably well for a few days. These are diagnostic to determine the precise cause and location of the pain. I am now going for nerve blocks to the facet joints (radio frequency cooking of the nerve ends) which is supposed to do the job for a longish time.
The bottom line is that it is simply wear and tear due to age, nothing to do with CML. It can be fixed and I suggest that you investigate that.
Incidentally, I have just achieved my first PCRU after a long period at around 0.002%, so maybe I will eventually be able to emulate you and come off Gleevec.
John