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Bone pain on imatinib

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Hiya, I am recently diagnosed with CML on 12.07.2024 and started 400g Imatinib on 20.07.204.

My WBC were very high at 153 when first diagnosed but has now returned to normal levels as per bloods taken a week ago.

But apart from the fatigue and cramps in my hands, feet and calves frequently I am also getting bone pain like a sharp stabbing pain even when resting.

Has anyone else had bone pain after levels of WBC have returned to normal levels? Could it still be the CML where my levels were high initially or could it be side effects of the meds?

My current treatment plan is to take 400g Imatinib for 5 years before consultant will consider reduction or remission.

Thank you.

Hi Theresa,

Welcome to the Forum.

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 can also remember the cramps (although I would describe them as spasms). The arches of my feet would spasm in the middle of the night, waking me with intense pain for a couple of minutes and would then suddenly stop.

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.

Your Consultant can't possibly know that you will need to remain on 400mg Imatinib for 5 years barely a month after diagnosis. Your BCR-ABL PCR Test results will determine what treatment you should receive. You should have already had one of these tests to provide a baseline and should be having one at least every 3 months. Ideally you should be below 10% after 3 months, below 1% after 6 months and below 0.1% (Major Molecular Response) after 12 months and thereafter. The other factors that will determine if you need to change treatment are if you have certain mutations (you should be tested for these if you aren't reaching the milestones I mentioned) and you may also need to change treatment if the side effects are unmanageable or unsafe.

You were only diagnosed a month ago, so everything is new and it is like trying to learn a new language whilst still being in shock from being told you have Cancer. Please be reassured that CML is treatable and life expectancy is in line with the general population.

If you are in the UK, it may be worth being referred to a CML Specialist Centre if you aren't already being treated at one:
https://cmlsupport.org.uk/resources/specialists-centres

Please keep in touch and let us know how you are getting on.

Take care

James

Thank you James. Yes I've had one of those tests I think, if that's what measures white and red blood cells. My next test is October at the 3 months stage so maybe that will be the one you've referred to.

The consultant seemed surprised I still had sharp stabbing like none pain after my white cells were reduced to normal levels.

I am still slightly anaemic which he doesn't understand either as he said he would have expected this to have resolved with the white cells now returning to normal range.

The cramps are very frequent and awful, especially after trying to do repetitive tasks like peeling or chopping veg, typing and in my feet and calves it's on movement and resting.

It feels like I've got on a rollercoaster that I've not been able to get off of. Still trying to figure so much out so thank you.

Theresa as I understand it the bone pain is a side effect of the imatinib rather than relating to the reduction in white cell count. Hot baths and keeping as active as you can helps; for me this settled down after about 3 months. For the cramps I used magnesium oil rubbed into the skin which helped.

5 years before thinking about dose reduction was the guidance from the Destiny Trial. I started this process in 2017 when I was 10 years in - it was new then post trial. It may be interesting for you to look at the saga which has me now on 200mg imatinib - https://cmlsupport.org.uk/thread/11481/imatinib-dose-reduction-starts#po...

Dose reduction is for the future though. In the next few months it is enough to get used to taking the pills very regularly - dose compliance is the MOST important thing to achieve remission - manage the side effects which will pass, and get your mind around the diagnosis. There are some useful videos on here about dose reduction but you don't I think need to focus on that right now.

The bottom line is that vast majority of CML patients will die with it, not from it, at the end of a normal lifespan.

Hope this helps

Thank you, that's really helpful.

It seems that above average plasma concentrations can lead to bone pain, so it depends on how well it is absorbed, which varies from person to person. It’s easy to measure and confirm if this is the case, then simply reduce the dose (eg to 300) or ignore it as it should be more effective.

I also remember having bone pain while on Imatinib, especially in the beginning.

Determination of the Cut-off Value for Imatinib Plasma Levels Linked to Occurrence of Bone Pain in CML Patients
https://www.dovepress.com/determination-of-the-cut-off-value-for-imatini...

Hi Theresa,

Back when I was diagnosed, I was on imatinib and had similar sounding pain to you. Stabbing bone pain, and it could come on quite suddenly and it was very painful.

My doctor and I tried painkillers and other treatment for a while, but eventually came to the conclusion that if it was imatinib causing the problem rather than the disease itself then given imatinib washes out of your system in about 5-7 days we would stop treatment and expect improvement around that time.

The pain stopped completely in 6 days. So we switched me to another TKI and it never came back.

David.

Yes my consultant is talking about changing my TKI in October if no improvement in the nausea, fatigue and so I presume also the bone pain. I'm rather nervous about trying new meds so it's good to hear you changed meds and it was ok.

Thesesa I think you will find that all TKIs have their signature side effect. You are experiencing one of Imatinib’s common annoying side effect, bone pain. I have my war story that I won’t get into. Suffice it to say that adapting to these effects is essentially what the whole game is about. Since you are newly diagnosed the most important thing is to get your number down. Your goal at this point is to first reach a cytogenetic response and then the molecular response. If imatinib is working I would caution switching to another TKI right away unless the side effects are unbearable. You may find it worse with another TKI. And then you may begin to feel trapped, and more emotions enter the scene. These drugs force you to adjust to a healthier lifestyle. Eat well, exercise, maintain a healthy body weight, and good emotional understanding of your situation. It gets better but there are some learning curves that you will experience. Good luck.

If you are having nausea, fatigue, and bone pain on imatinib it is a no-brainer to me to take a 1 week break from imatinib to establish for certain that it’s the cause of these problems, and assuming it is it obviously follows to change to a different TKI. With all the TKI options we have these days, there is no need to needlessly suffer from high grade side effects.

David.

Thank you, I'm just starting out and definitely learning to adjust to the side effects.

Yes I think my consultant is of similar view except he won't support any break in medication being so early on and my levels gave been so high. I shall see what he says.

Your consultant is absolutely correct. Adherence at your stage is key. You still have to get yourself to a safe level from the disease. My point merely is that all TKIs have side effects. Although imatinib does have a nasty rep for bone pain some of the other TKIs have more serious side effects that involve the heart and lungs. Unfortunately discomfort is a reality you have to make peace with. Once you achieve MMR then you can relax a little. And of course if it’s unbearable by all means switch…. But hopefully your numbers are moving in the right direction. That adage “no pain, no gain” has an annoying ring of truth in the CML community.

I’m not so sure about that. Adherence is important, but not at the expense of high grade side effects.

Grade 3 or 4 bone brain is debilitating and is not something that needs to be endured. My BCR-Abl ratio was 76% when we discontinued imatinib to confirm it was the cause. It was, with a lot of hindsight, a very good decision. 5 or 6 weeks following the introduction on dasatinib I was down to about 4%.

Grade 3 to 4 bone pain is not an inconvenience, or something uncomfortable. It’s absolutely not liveable with to any reasonable extent.

David.

Agreed intense bone pain is not worth the struggle. You make a good argument David and I don’t dispute. I would point out, however, that many doctors, oconlogists, are not as comfortable in making adjustments to protocols. Especially when someone is under their care. I’m sure if I mentioned this to my doc he would say not to stop treatment even for a week. But with all the years I have in with this treatment, and what I have learned from all the threads on this site, a week’s cessation sounds reasonable. In my mind though it’s not even necessary, I would bet Theresa’s discomfort is a direct result of her imatinib use.

Theresa, I hope these posts help. Take solace in the fact that you have options and a place to come and ask questions.
Hang in there and best of luck.

Joe

Welcome to the forum.

My son was disagnosed a little over a year ago and was on Imatinib (300mg) till recently. He had recurrent muscle and bone pain and was constantly tired/fatigued. The only thing that worked for the muscle pain was hot shower - there were many nights when he had 4-6 hot showers - it helped immensely. Painkillers are not a solution beyond a point.

Also, have you checked your Vitamin D3 levels? My son's D3 collapsed and that resulted in elevated levels of ParaThyroid Harmone which is what causes muscle pain. It might be a good idea to talk to your doctor and test both D3/PTH and if needed, take D3 supplements (i believe it isnt advisable to take D3 supplements without confirming deficiency).

The good news is that the pain came down to manageable levels. The bad news is that the pain never went away fully till we switched medicines (we switched due to sub optimal response)

Good luck!

Thank you for responding. That's really helpful information, I will definitely speak to my CML nurse about the vitamin D levels being checked.

There seems no pattern to the pain, it can come on suddenly and whether I've been resting or walking more.

Hi Theresa

Sorry to hear that you're experiencing so much bone pain. I was on imatinib for 4 years and also had it regularly, although not severe enough to stop me from doing my daily activities, but I know that it can be debilitating.

Just a thought I had: when I was first diagnosed, I remember my doctor telling me that the excess white blood cells and blasts in my body had to "die" first, and this would cause gout as they died in such large numbers, causing a build-up of uric acid in the bones and joints. I was therefore given allopurinol to stop this and never experienced gout. It's a long shot, but could your bone pain perhaps be related to this?

Best wishes and I hope it settles down soon.

Martin

Thank you so much for responding. I was taking the medication you mention to prevent gout but I had a severe allergic reaction and had to stop taking it.

Thankfully it seems to have settled in terms of frequency but when I do get it, it is very painful and there's no rhythm to whether I'm resting or active when it occurs.

Theresa - your symptoms seem really similar to me. No rhyme or reason to why a sudden onset of pain might occur. I could have had my legs up resting watching a movie, or could have been walking and suddenly there was this incredibly sharp pain. I fell in the middle of the road once between the pizza restaurant across the road from me and home, and my poor wife had to basically stop traffic until I could get off the road. It was my lowest moment with CML.

I strongly think that your pain is caused by imatinib. It sounds so similar to mine. Just a week off drug will confirm this, and while I do get your doctor’s reluctance I think it’s something you should push for. Realistically, a week off medication to prove or disprove something is a worthwhile price to pay. Nothing irreversibly bad will happen in that time.

David.

Thank you, I'm next due a review with my consultant late October so I'm going to see if it settles and if not discuss it at that review with him.