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Bone aches and muscle pains

Hi everyone,

I am 26 years old and was diagnosed with CML on 15 Aug 2024. I have been taking 400MG imatinib and my wbc count is now back to a normal level.
When starting the treatment, I had no side effects and was able to do non contact sports and go to the gym.
Over the past 2 weeks, I have been getting pains and aches in my bones. Especially in my hands, elbows, knees, feet and shins.
I have been taking magnesium tablets and pain killers when the pain is bad. I am bit confused as these pains were not there at the beginning and I was able to do sports.

Has anybody else had these side effects and do they eventually go?
I am quite an active person and keen to begin playing sports and going to the gym again so some advice would be greatly appreciated.

Thanks,

A

Hi there,

Bone aches and pains are unfortunately not that uncommon.

Magnesium is often recommended, but you are already taking that. Some people find the magnesium oils (or creams) are better than tablets.

Another one that some people find works is loratadine. It's an easily available, over the counter, antihistamine. Maybe worth giving it a try?

David.

Thanks David, I will definitely give that a try.

Did you also experience these side effects? If so, did these aches/pains get better over time?

Yeah, I did have very strong bone pain with imatinib which meant I had to stop taking it. That was the sort of pain that stopped me walking though, so a bit different.

All the TKIs have different side effects, but musculoskeletal ones are common so I'd try to stay hydrated and lots of stretching if you can.

David.

Hi,

I can remember being in your position when I first started treatment on Imatinib. After 2 or 3 weeks, intense bone pain started. The best way to describe it was a shooting pain and it felt like my bones were trying to push out of my body, particularly my arms and legs.

I tried various painkillers and found that Co-Codamol (Paracetamol & Codeine) was the most effective, it would kick in and take the edge off the pain after 30 minutes and would provide around 1.5 to 2 hours of relief.

The pain gradually subsided after 2 or 3 months until it become just the occasional twinge. I remained on Imatinib for over 2 years and even increased the dose from 400mg to 600mg and this didn't cause the intense bone pain to return.

I hope the bone pain improves for you soon.

Take care,

James

I found that what you eat and how you workout can influence side effects while on imatinib. Look into an anti-inflammatory diet. Less dairy and carbs and more fresh veggies. Try to fry less and bake as an alternative. I found that over exertion of muscles did not help. So while I adhere to a workout regimen, which I believe is key, I found lifting heavy weights or doing twists and bends caused more harm than good. Isometrics too were problematic. A gentle approach is what worked better for me. Definitely include weights and aerobics but take it slow and more relaxed. TKIs are amazing for what they do for us but learning how to live with them takes time. I would say be mindful of your intake and keep track of your movements. You will find the sweet spot but give it time.

Good luck.

Hi
A long time ago (17 years ago) when I was dx with CML in the first six months of taking imatinib (branded Glivec at that time) I experienced intense bone pains. I remember going to my GP surgery but could only see a locum doctor-unusually he knew about Glivec and said great the drug is doing its job and clearing out lots of the leukaemic cells in your bone marrow so it will get better as you reach MMR.
He was correct as it gets better-stick with it I suggest
Best wishes
John

Hi James,

Thank you for sharing.

I have found the paracetamol helps.

I guess I just need to be patient and wait for my body to fully adjust to the medicine.

Hi Joe,

Thank you, I will definitely look into having a more healthy diet.

Good to hear that you are still able to work out.

Hi John,

Thank you for sharing.

This sounds very positive and makes sense as to why the bone pains have started.

I just need to be patient to get to the MMR stage which can be difficult at times, considering I was playing sport often but it is good to know that I can potentially get back to that in the future.

I agree with the point johnw1001 makes which is that as a TKI is clearing the marrow of leukemia cells, bone pain will be more intense. It took me 5 years to achieve MMR, which from what I gather from this site is quite long, and those years were definitely, without question, the worst during my 11 years on Imatinib. As a consequence I tried everything in my power to fix the problem which boiled down to basically diet and lifestyle. Not sure that helped at all in getting me to MMR but in the least it helped divert my attention from the annoying pain. I will make one final point, as painful as the effects of Imatinib can be, the possiblity of long term irreversible side effects are, from what I also get from people on this site, the least with imatinib in comparison to some of the other TKIs. The potential nasty side effects can be more threatening and long lasting with other TKIs. Imatinib stopped working for me but in some ways I am glad if I had to spend so much time on a TKI maybe Imatinib is not so bad considering the other factors with other TKIs.

Hi A, you are very young and it's a lot to take in and deal with. I had the same issues and you are likely to find that it will start to ease after a while but it could take weeks, or a few short months in my case. Keep doing some exercise if you can to help yourself both physically and mentally. All the best.

A, I concur with what others said. I started experiencing the bone pain, also muscle cramps a few months in with imatinib. It did get better over time. There may be other side effects that come and go but the important thing is to stay positive and take care of yourself- exercise, diet, also sleep.

Hi Roza,

It is encouraging to know that others have had similar issues at the beginning.

I am keeping active daily, aiming to get back to playing sports once the aches have gone.

Thank you for your advice.

Hi,

Thank you for your advice, yes I am focusing a lot on my diet and eating healthy.

How long were you experiencing aches for? Once the aches improved, did they come back from time to time or not?

I wish I had kept a journal of side effects but from my memory it started a few weeks into treatment and lasted maybe 2-3 months. Bone aches did not return after they went away but muscle cramps did very occasionally and with much less intensity than the initial period. Hope that helps.

I wish I had kept a journal of side effects but from my memory it started a few weeks into treatment and lasted maybe 2-3 months. Bone aches did not return after they went away but muscle cramps did very occasionally and with much less intensity than the initial period. Hope that helps.

Thank you.

I have been keeping of a journal this month and have noticed the aches have improved. It is coming up to 6 weeks of experiencing aches so hoping it will become minimal soon so I can resume sports.