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Joint stiffness and bone pain after 5 years??

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Hello all

I was Dx in July 2011 and began taking 150mg/ 2X day of Tasigna in Aug. 2011. I did have side effects of headache, mouth sores, nausea for the first few months and all but the headaches have quelled. It is now 5 years later and all of my blood work looks wonderful however, I am now experiencing joint stiffness and pain all over my body. My headaches remain (at least once a day) but this joint pain has popped up in the last 3 months. I have seen my GP who did blood work and checked for Lupus, Lyme and Magnesium levels (all negative) which led her to chalk it up to Tasigna side effects. My Onc tells me that side effects would not pop up this late in the game.... true or not?? Does anyone else experience side effects after haven taken a TKI for years? is it all in me head?

Thanks so much for this supportive community here!

Hi

Sorry to hear about your joint stiffness and bone pain.

I have been on 4 TKI's since diagnosis in June 2013. Personally I started to experience joint stiffness approximately 7/8 month into Diagnosis. I was on Gleevec at the time. My Oncologist arranged various tests and scans, spine and hips, at that time all came back "normal" including bloods like HLA-B27, again negative. For me my hands started to claw, knuckles would burn, hip joints were really stiff and sore, as were other joints. I suggested to my Oncologist it may of been as I was very active with my new born son, so mentioned that, believing tiredness and even repeatedly holding my son may have been a factor. He rightly dismissed this as not consistent with my troubles unless I had been swinging from trees! I was taken off Imatinib and placed on Nilotinib 150mg x 2 daily, at first I felt like things were improving, but over time I started with mid back pain again and my Onc switched me to Dasatinib and then onto Bosutinib, which is where I am now.

For me I have had ongoing issues which are being looked at currently. Personally I think it is reasonable to believe that side effects can manifest over time, as opposed to dissipate. I just think we are all different. Just like some develop mutations over time for arguments sake.

I know lethargy and energy levels can suffer over time with some folk.

So to answer your question, from my experience my side effects increased over the months prior to diagnosis.

The good news is, if your Oncologist suggests you switch, it would seem a lot of people feel a difference.

Please let us know how you get on, and keep us updated, updates always help.

John

Hi,

I'm sorry for such a short message, but I'd prefer to reply quickly than not at all.

Some side effects of TKIs can come on late. For example, a pleural effusion can occur with a dasatinib patient after many years of successful treatment without that problem. That said, it's easy to blame all our ailments on TKIs. The only way to know (and even then, not for sure as John alluded to earlier) is to stop taking them and see if things improve.

Sorry to ask such a blunt question: but what age are you? Is there a chance that some of the pain you are getting is due to ageing? 

David.

Hi David,

Thanks for taking time to reply! I am 50 years old and have always been athletic and active up until May of this year when this problems started. It has gradually gotten worse in all of my arm joints and most mornings I have to lift my coffee cup with two hands for fear of dropping it. It is very frustrating. I do continue my daily walks, bicycling and work outs (at a much easier pace now) hoping the endorphins will help the pain. This club we are all a part of really sucks and I feel like I cant say that out loud to anyone because my brother has already told me that so many people have "real problems" and this is just minor :(. I get that we are lucky that most of us CML-ers have a life saving drug but for a lot of us that comes at a cost.... financially (it's $9500/month here in the US), physically and emotionally. I'm thankful I found this forum. Sorry for the ranting.....

THANK YOU!!

 

 

Thanks John, I will keep you posted if anything turns up! And thanks for your thoughts and info, it helps to know I'm not the only one feeling this way