You are here

Excessive bone pain imatinib

Categories:

Hi all …I was diagnosed with CML in June 2023 and commenced on Imatinib.
I have been suffering with excessive bone pain mainly rib cage . I cannot get rid of it. My spleen was normal size on diagnosis. I have codeine 30mg but doesn’t really help. I can’t cope with the pain it’s constant and my consultant has dismissed it.
I also suffer with nausea and vomitting after taking. At night the days I take imatinib I suffer extreme burning itching skin. I’m on reduced dose of 400mg every other day due to side effects.
My latest bcr was 0.25.
Can anyone recommend pain relief as everyone is dismissing me and I feel low due to pain. I have anti histamine for itching and gp has changed my anti sickness. I’ve joined swimming pool which has hydro pool to help.
Please help with the rib cage bone pain !!!
It’s deep in bones constant dull ache

Thank you for any advice

kel1arthurs, try breaking the Imatinib 400mg tablet in half so you are taking 200mg each day.

Buzz

Goodness, that sounds really hard.

When I was in imatinib I had terrible bone pain. Really debilitating - but thankfully my doctor took me seriously.

Mine was in my femur, primarily. But I suppose it can be different for everyone.

I tried lots of things, but in the end discontinuation of imatinib was what sorted things out. There are other TKIs to take. If you stop imatinib, it should take about 5 days for it to “wash out” of your system. So you could suggest to your doctor for a 1 week treatment interruption to ascertain if the pain you are feeling is directly caused by imatinib.

David.

My consultant doesn’t want me to change and dismisses my pain and other side effects …I’m so low I can’t cope with this constant deep dull ache in my rib cage 😞

And if I walk to far (went on a walk with my friend for fresh air walked about mile and half my left hip pain was unbearable unable to weightbear for two days )
My right knee joint also hurts when walking about 6500 steps 😞

Can I do that …do you think would work

Hi, sorry you are suffering so much .I take Zapain they are little miracle pills for me ,I suffer from bad back pain .I only take 2 in the morning when needed and they last all day .
As for your other side effects only way to get rid of those is to change to Dasatinib that’s what I did . Good luck .

I experienced lower back pain for years on Imatinib. If the pain is unbearable then by all means try to switch. I find it does take a period of time for your body to adjust and that period can be quite a while. Also if you find you are at odds with your doctor then find another. The most important thing though is to stay calm and take it slow. I find these effects ebb and flow. Perhaps your dose is too high. The good news is that there are alternatives so take solace in that. You are doing the right thing by asking this group for advice. You will resolve this problem. Your body, after losing its balance, is trying to find its center. You will get through this and you will be stronger as a result. If you were diagnosed in June you should be ready for another BCR/ABL lab test soon. Hopefully you are well on your way to a molecular response.

Thankyou x

Thankyou x

Hi,

I am now on the forth month since starting Imatinib 400mg.
I have itching skin for the past 2 months so I am taking antihistamines, bath in baby oil, steroids cream (prescribed by hematologist but can not be used for longer period). All those things does not cure my itchness but at least it is now mild.
I am also taking omeprazole every morning. When I do not take it I get burn sensation and pain in my liver.
When I take the imatinib in the evening I also take antisickness tablet if I start having nausea. This happen once every week at the moment.
I am also taking magnesium, vitamins d and b12.
I hope your side effects get better.

Given the severity of your side effects after 6 months I think you need to get your consultant to consider changing to another TKI. Most adverse side effects become tolerable in 3-4 months maximum.You have responses from 2 of the forum who have changed to Dasatinib and got a much improved outcome.

I assume you are in UK? I wonder where you are seeing your consultant, and if they are linked to one the specialist centres listed under "Patient Info" at the top of the page. I was lucky, responded well and had tolerable side effects so a haematologist at a Regional General Hospital was fine for me most of the time. Two of my consutants (I'm nearly 17 years into this) have needed to take advice from specialist centres about me and have been able to do that in Newcastle (when my consultant was in Durham) and Liverpool (consultant in Chester). Sometimes CML patients need the input of one of the CML specialist centres to find a treatment that works for them, and you may be one. Good luck.

The rib cage pain is what is getting me down ….I cannot shift…constant dull deep pain in the bones …I cannot concentre on work or day to day living

How are you doing kel1arthurs?
I see your last post to this thread was in November ‘23.
Have your side effects lessened?
I hope your situation is improving.
Let us know how you are doing.
We all learn from the experiences of others.

Hi, I had bone pain when I started Imatinib and I was using a very strong painkiller. I had the rib cage pain and also shoulder pain. I had a week where I could not move my arm. This lasted a couple of weeks. On my fifth month since starting Imatinib and I now have other side effects. My hematologist does not pay attention to many of my side effects.
I hope your side effects are getting better. I suppose we will have to learn to live with some of them if they are mild.
I really hope you have a hematologist better than mine and that he listen to you.
Are you taken any magnesium, vitamins etc?

Thanks everyone….my sickness is better after switching to promethazine but bone pain remains ….consultant doesn’t care and dismisses …I emailed her Monday telling how upset I am and the imperial college cml consultant said to switch TKI…I have started taking iron multivitamins and vit d but bone pain remains I’ve also been swimming to see if helps …it’s really been getting me dow and I’m so tired all the time

How are things with the bone pain now?

Have you tried loratadine? It’s an over the counter antihistamine and many CML patients have had success with it helping bone pain. The jury is out on the efficacy of it - seems to work for some people, not for others. But perhaps worth a shot?

David.

Hi yes tried …
I’ve contact cml specialist centre Nottingham and they have accepted transfer of care so in process of changing at minute x

Hi there ,
As you were dx about six months ago this is par for the course with imatinib to experience bone pain and pain in the rib cage;mine was quite severe and debilitating but gradually after six months got less painful .
As one locum doctor said to me Glivec as it was then 16 years ago "is doing "its job as ones bone marrow is being rid of leukaemic cells -he said just think of it in a positive context.
Re rib cage pain if you do stretching and daily exercise for the upper body it might help -check your Vit D score and also increase your daily dose of magnesium citrate as this might counter the musculo skeletal issues with imatinib.
I am currently having dreadfully irritating rashes (not shingles) with a bad scalp -my practice nurse gave me a hydrocortisone cream and betnovate scalp lotion-but over use of steroids thins the skin.I use a natural product produced in Australia called Hopes Relief-Derma Lotion for Dry and Itchy Skin made from colloidal oatmeal and 9 other natural products
On your doctors reluctance to move away from imatinib the alternative dasatinib on full dose leads to 1 in 5 patients experiecing fluid on the lungs and nilotinib is hard on the heart and has a fasting regime twice a day when taking the medication.
Re nausea and vomiting from imatinib take the pill with stodgy food like pasta and also lots of water-that in my experience helps a lot.
Best wishes
John

Glad to hear you will be getting some expert help to sort out the beast treatement regime for you. Please let us know how it goes.

Thank you John very helpful advice

I will do thank you xx