Hi all. Recently started taking sprycel. Was taking it at night right before bed. Other than severe headaches, Didn't notice much difference in myself until recently - last five days. Been taking meds 3 weeks total. Having horrible neck cervical pain and knee pain. Also having pain in my forearms. It seems like the longer I take the meds the worse I feel. Will this change? Will the pain eventually stop? Please I need advice. I see people stopping meds. To start new ones. I don't really want to switch if It will get better.
You are here
Sprycell as time goes in....
Categories:
Hi,
quite a few people complain of muscle and bone pain (myalgia, arthralgia) as a side effect of TKI therapy. In a lot of people this effect does ease over time and many find that it disappears completely. With imatinib I know it is a common side effect within the first 12 weeks and then seems to resolve after the first weeks and months, with other TKIs I am not sure of how prevalent it is. However, some people can suffer higher levels of pain than others so you will need to monitor yourself over the coming weeks and months and if it remains a problem you might want to try switching to another TKI. 3 weeks is not long enough for you to gauge whether this effect will resolve or worsen in your case.
Meanwhile you might want to try gentle stretching exercises and/or relaxation techniques to help you relax. Getting a good nights sleep will certainly help although this may be difficult given you have only just been diagnosed and started treatment. There is some evidence that treatments that boost serotonin levels can help.
You can boost levels of serotonin by taking L-tryptophan - an "essential" amino acid because humans cannot make it and must obtain it from food. It is a precursor to serotonin, see link to more info here: http://www.lifeextension.com/Magazine/2013/5/Better-Brain-Chemistry-with...
I know others do suffer very badly from myalgia and so I have included the following article about a condition called fibromyalgia - severe muscle and joint pain (non arthritic) - as it may have some useful information about how to deal with this kind of pain.
http://www.medicinenet.com/fibromyalgia_pictures_slideshow/article.htm
But as I said, in your case these are early days in your TKI therapy and this side effect may well resolve itself.
Sandy
Thank you Sandy. I appreciate you answering in such detail and also for the links. This is all new to me. I have been out of work since my diagnosis. At times I read of people who " haven't missed a day of work since being diagnosed" and I feel like a crybaby! But this has been an emotional roller coaster. I'm very thankful for this forum. Take care.
Barb
Hi buddy,
am on sprycel 100mg ever since after dxed last Oct 15. 2 days ago started experiencing stiff neck which started from lower back.rapid heart beat and pain in forearm as well. Went and got my checked and doc said I was ok. Magnesium level seems normal. Brain scans done all looks normal. Neck muscle is still the same and sometimes I twitch as well..
so im also looking for an answer. Stay strong ok... I'm sure nice people in this forum is also going through something similar.
stephen
perth
Hi Stephen and Barb, I've been taking 100mg of Sprycel daily for just shy of a year now. With my Profs' approval, I take 50mg each morning when I wake up and 50mg each night when I get home from work - I've found that 'splitting' the dose over the day has greatly lessened some of the side effects that i was experiencing (nausea, dizziness, extreme hot flushes, palpitations and aching muscles and joints)... if you're up for it, maybe you could ask your care team about splitting the dose - in my experience, it doesn't harm/slow the way the the drug works. And yes, the side-effects do lessen over time - or maybe your body just gets used to and adapts to these different feelings and the new 'normal'.
Gentle stretching and/or going for a walk are also the most wonderful ways of alleviating muscle and joint pains - if you're interested, you can google simple 5 minute yoga and stretching exercises and practice them in the comfort of your own home. I always know when I've been a bit too sedentary - my neck, forearms, wrists and ankles ache like crazy... stretching and walking always fixes the problem!
Also, I've found that concentrating on work and all of the distractions that the work place offers, prevents me from thinking about what's going on with my body - you won't have time to get emotional and you'll tend to ignore the TKIs side-effects... before you know it the work day is over without you feeling ill or sore - I look forward to going to work because i know i'm not gonna feel like crap-ola.
Ask your care team for suggestions - with all of the monumental and positive advances in treating and managing this ridiculous disease, our doctors and the medical researchers are not going to let any of us suffer unnecessarily or die in a hurry... my Prof. reckons i'll be squashed by a double-decker bus before CML has any terribly negative effect on my quality of life or life-span (we don't have double-decker buses in Sydney - i'm guessing my Prof. has very high hopes!!!)
Good luck - try not to let it get you down. Be fabulous at all times!
Lynette x