You are here

Arthritis / leg pain from Glivec / CML?

Hi, I am Kate (a 36 year old Brit who now lives in Australia.)

I was diagnosed in September with a very high white cell count and after initial treatment with Hydroxyurea and Allopurinol started on a trial which involves taking 600mg Glivec and, if I become resistant / don't respond well, Nilotinib.

When I first started on the Glivec I was so pleased as I had very few side effects and my white cells were coming down nicely. But then I started getting bruising all over my legs (worse than before dx) and blood tests showed that my platelet count plummeted to 12. My doctor took me off the Glivec and after 3 weeks off it all my cell counts returned to normal and the bruises have disappeared (just in time for summer here!)

I started back on Glivec (600mg) on a Friday morning and by this Tuesday I was suffering terrible pain in my legs. I had read that Glivec can cause muscle cramps etc. but this was unbearable and long lasting. I could hardly walk and had to take the day off work. I was  told to take Panadol (have read conflicting advice about this too) and luckily had a routine appointment with my doctor at the hospital on the Thursday.  He has taken me off the Glivec again and given me some Volateren (a NSAID) as I am in so much pain (especially morning and evening.)

Further tests on my blood show inflammatory markers, signs of arthritis but he doesn't seem to see this is a long term thing and mentioned that it could be a result of the cell death? They seem to be considering putting me back on Glivec at 400mg at some point.

I am beginning to dread going back on the Glivec as I have never felt pain like this (and this is someone who has given birth and had a bone marrow biopsy!!)

I have always found this site very useful and positive and my friends commented on what a positive attitude I had to this whole situation. I went back to work after 2 weeks etc. (I work part time) but I am concerned that I might have been a bit blinkered. I thought "I'll go on Glivec and it will all be plain sailing from there" but this feels like a bit of a roller coaster and it is affecting my ability to look after my very active 20 month old little boy.

Has anybody else on the forum had such severe pain or a diagnosis of arthritis as a result of CML or Glivec? Any suggestions on pain relief (baths seem to help.) Also I am wondering if 600mg is quite a high dosage for someone like me (5"3 and 52 kg.) I took second opinion advice on the trial and was told to go for it given my high white cell count.

Also a bit worried about the possibility of Nilotinib because it seems to have to be taken very stringently (time before food etc.) and not sure if I could drink alcohol with it.

Apologies for such a long post!

Kate

Dear Kate

this leg ache/cramping effect of imatinib is a common experience and most of us have experienced it. However, the constant leg aches disappear at about 3 months into therapy. In my own case this happened almost to the day 12 weeks after the initial dose of imatinib. It is not dose dependant and happens whether you take 400/600 or 800mg. 

I think it might well be to do with the high cell count and the consequent effect of high cell death rate. That is a good thing because you do not want those sort of cells- the abnormal CML cells- living on and on in your marrow crowding out the normal cells. Eventually your marrow will produce enough normal cells and you will then be able to live normally without constant pain.

Heat helps- but it is a problem in the first few months. After that you body will right itself and hopefully the muscle cramps we all experience with imatinib will be intermittent and you will be able to control them. You might do well to ask your doctor to test the level of magnesium in your blood. This is usually very low in most cancer patients and it is important to get it back to normal levels.  You can do this by rubbing magnesium 'oil' into your skin once or twice a day. After a few months your levels will start to get back to normal/optimal for good health. There is a lot of research on this at the moment and how low levels are found to be indicated in quite a few diseases including cancers and cardio-vascular disease.

I hope you can find the strength to deal with this unpleasant effect, it does subside within 12 weeks. I also hope you can start imatinib again and that your platelet count holds up. It is important to keep going.

I have no experience of nilotinib - but others on this forum are currently taking it, they might be better able to advise you on what it is like to take it. Nilotinib has to be taken without food as high fat meals do increase the levels in the blood so you do have to be quite strict with your daily routine. However I am not sure that leg pain is one of the side effects (nor with dasatinib?) 

I hope this helps,

Sandy

Hi Kate

Sorry to hear how you've struggled initially with Glivec. As Sandy says, most people get cramps of differing levels of severity. In my case, initially they were more or less everywhere but mostly in my feet and back. The most severe ones however were in my neck in the first few months - really very painful.  It was like having a cricked neck for a couple of weeks and I had to take pain killers.  But that subsided and I haven't really had it since.  Now 18 months on I still get cramps from time to time but they aren't severe and usually caused by straining a little. You know how before you took Glivec if you strained in a slightly odd direction you might get a muscle twinge? Well now when I do that I get a cramp instead and have to do some yoga-esque maneuvres to correct it. It causes my work colleagues great amusement when it happens in the office! I had to warn them that if they saw me doing some odd looking movements at my desk that was why. So we can laugh about it now.....

Also, I too had a bit of a cell count dip to start with.  In my case it was neutrophils (pretty common for these to dip) but they recovered after about 6 to 8 weeks.  I understand that to be the result of initially clearing the duff CML cells (causing a drop in count) and the healthy cells then taking over production as it were (so the count steadily came back to normal).  Since then, all has been perfectly normal.  Hopefully in you case that will happen with your platelets - I would persevere.  It may be that given your high white count you had quite a lot of duff cells to clear so it may take a bit of time, and be a bit up and down during that time, but in the end I would hope it would work itself out.  It can be tough at the start with all the uncertainty as to where it may go - I definitely had that - but for most people it does settle down.

As for dosage, I recently read an interview (which Sandy has put on the site) with one of our leading CML experts in the UK which suggested that there was a view amongst the experts that the starting dose should have been approved at higher than 400mg, so 600mg isn't necessarily a  "high" dose.  Obviously people differ in how they process medicines so it's possible you are processing it very efficiently and getting a high amount in the blood, which is good for dealing with the CML but maybe increases side effects and tolerance issues.  That I think is possible.  They can measure that and adjust your dose if necessary.  But at  the start they likely want to get all the counts under control, which may mean a bit of adjustment to begin with to achieve that and then hopefully like most people it will settle down. 

Good luck and have confidence.

Richard