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Is joint pain common? (dasatinib)

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I've been having some serious joint pain, mostly my thumbs for the last couple months.  I'm finding ways to do things with my hands without using my thumbs.  I've been on dasatinib for about 18 months, started at 100, down to 50 in 2 months, then down to 20 about a year ago.  The dose reductions were because of side effects so it seems I'm fairly sensitive.  But even at 100mg I did not have pain like this.  I've read about bone and muscle pain, but this seems clearly joint pain.  There have been no incidents or activities to account for this pain.  It just showed up, escalated, and then settled in for the long term.

I'm trying to figure out whether to check with my regular doctor to start looking at this, or add it to the list to discuss with my oncologist at my next appointment.

Maria

Hi, I am having some bone and joint pain all the time ,the back of my neck is stiff ,my upper back aches and my right shoulder is very painful, I have flair ups of pain in my hip and now I have tinnitus.Who knows tho if any of this is down to Dasatinib or purely age .I have been undetectable now for nearly 2 years  and on 40 mg I want to reduce now to 20 mg to see if any of this pain goes away but my doctor won't hear of it .Wondering if I dare just to reduce anyway cos pain is driving me mad I have to rest after every little job .Hope you feel better soon .

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It seems that you both would benefit from lowering your dosage to 10mg and 20mg, respectively to help with the bone/tendon/ligament/muscle/joint pain.   Two years of undetectable at 40mg is far longer than necessary.   Maybe you need to change oncs/hemas.   You could always first reduce to 30mg if there is any question in your mind about maintaining your undetectable status.  I don't see it as an issue.  

Thank you so much for taking the time to reply .My Doc is worried about mutations that is the reason for not reducing my dose .Take care ,stay safe .

You might want to change Docs.  There is no evidence that lowering dosage causes mutations.  

Hi, o right thank you for that information.My Doc is a Haemo and not a specialist so is very cautious.I have seen a CML specialist in another hospital but he was absolutely horrible ,he was talking transplant when I changed from Imatinib to Dasatinib he scared the hell out of me so I said I wouldn't be back to see him ,so now I wouldn't know where to go .

Hi Maria,

If you look at the product information for Dasatinib and also on sites like Drugs.com the effects that you describe are  quite common as side effects.

Very common over 10%-musculoskeletal issue on average 11-22 %

Common 1-10 % Arthralgia (joint pain with no swelling);myalgia (muscular aches) ; muscle weakness,stiffness,spasm.

Uncommon 0.1-1% Raised CK (creatine kinase in blood);muscle inflammation

I guess that we all react to a semi- toxic drug differently but other general factors to take into account might be the additional medications being taken-some statins will interact for instance.You might want to have your calcium and magnesium levels checked.As well I have found that using a topical spray of magnesium after a while will give some relief from such issues.

A further approach is to consider diet and foods and avoidance of inflammatory foods like sugars,processed foods and certain additives plus of course minimal alcohol-some say it is fad but I find that diet plus exercise does help.

I wish you well

John

Thank you John, that is helpful.  Particularly the note on statins.  I was switched to dasatinib due to a TIA on nilotinib.  They also added a statin.  I lasted 3 days on the statin, almost drunk staggering at times, strange tinnitus/silence.  My doctor at the time thought it was odd.   

I do notice that sugars don't help.  I eat very little processed food so I know what I'm getting, and keep sugar very low.  

I guess I'll add my painful hands to the list of side effects and manage them as such.  I'll bring it up in my quarterly appointment next week.  I just checked my results and calcium is checked quarterly, but not magnesium.  I've recently dropped the Rolaids with magnesium I was taking for cramps.  I don't get the cramps anymore and the extra antacid seemed to interfere with my gut.  The timing of dropping the Rolaids seems to match with the increase in pain.  I'll see if I can get magnesium another way.  I will check on the spray or maybe a pill.

I'm not much of a drinker.  

Maria

Maria,

I use transdermal magnesium in the form of a lotion/cream. I find it easier to use if I make it part of my 'before bed' routine and rub it into my feet and lower legs. It really helps with sleep as well as muscle aches/spasma etc. 

Take a look at the following for an overview of the importance of magnesium and why/what/how to use supplemental Mg to correct low cellular levels. I find Ancient Minerals Mg ultra (lotion) is the best for me... you can find this brand easily online but do shop around.

It may well take some months of regular/daily use to get levels up to where you need in order to counteract the symptoms you describe, so give it some time.

Sandy

 

 

I got some of that Ancient Minerals (the oil instead of the lotion), as well as an oral supplement.  Hopefully these will do the trick, or at least make a noticeable improvement.

Thanks,

Maria