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CML/TKI and Steroid injection advice

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Hi all.

As I have mentioned in previous posts. I am still struggling with ongoing issues. Since resuming Bosutinib I would say I have had even more of a flare up with groin, hip, knee, back and neck pain. 

Today I seen a Rheumatologist who seemed to be bemused although he said he believed it looked like I "was headed for transplant". He didn't seem to have any experience with TKI's, ordered a new spinal MRI due to lack of flexibility when he asked for me to touch my toes. He seemed very surprised at my lack of range of movement, but lack of joint swelling. 

He decided that a Depo Medrone Corticosteroid shot in the backside may be beneficial and ushered me to the nurses room, closed the appointment, and ushered the next patient in. Whilst I was in with the nurses, I decided to leave the shot until I done a little research, and ran it by my Haematology team (different hospital trust). 

I just wanted to ask other CML'ers if they had steroid injections, whilst on treatment, and what there outcome was? 

Take care all.

John

Hi John,

Musculo-skeletal effects of TKi s

If you look at the product literature for many of the TKI s, for some CML patients, there are substantial issues of bone pain,joint inflammation and muscle stiffness or inflammation.. I  remember reading an article by Steve O Brien on such issues and indicating that  for such conditions scans would produce nothing abnormal so this is a grey area for haematologists where it is difficult to explain the effects of TKIs.What is sure is that a drug like Bosutinib is quite powerful and perhaps not as toxic as some other chemotherapy agents but can be placed in the category of medium toxicity.

Have been on imatinib for nine years and still suffer a lot of musculo -skeletal problems of severe night cramps and very stiff calf muscles and some arthritic joints .A few years ago had an episode of a stiff neck that took over a year to resolve via massage and physio-saw a face and neck specialist who suggested that imatinib was a very powerful drug . Also had a problem with drug interaction (taking an antibiotic for a urinary issue) leading to severe inflammation of the posterior muscle to the hip joint and yes had steroid injections (in Thailand whilst on holiday) which did help a lot but it took a long time to resolve itself.

Currently have an inflamed plantar in the foot and a few months ago had an ultrasound guided  Depo injection in the heel but it failed to resolve it.The next steps would be shockwave therapy or finally surgery.We are not sure if the foot issue is related to the tki or not.

As a last resort I am being treated by a Chinese physician with acupuncture and acupressure/reflexology-the good news is that the calf stiffness has gone and there are no more night cramps but the heel is still painful and will need a longer period of treatment.

So I suggest that haematologists will be reluctant and perhaps unable to specify a remedy for tki related musculo-skeletal matters but that orthapedics may suggest steroid injection interventions as solutions.I have asked if steroids given by injection locally  or given topically will interact with a tki and it seems the answer is no but a long term course of high dose steroids given orally might need to be reconsidered re drug interaction.

So my experience is variable and it is up to you -the steroid injection might help or you may need some other approach.Probably it will not interact with Bosutinib but you might ask that question.

Wish you well with your treatment

John W

Hi John

Interesting to hear your experience of non conventional supplementation of Chinese and Thai treatments for your pains, and sorry to hear about your troubles.

I have since spoken to my consultant who stressed he would not recommend steroid injections, in case of the route of transplant. Glad I declined! He was very firm about this and said steroid treatment can lead to autoimmune suppression and complications of transplant. 

Sorry to hear about the trouble with your heel, my Dad experienced this for about a year, it then just strangely resolved itself.

I am now feeling a bit worse for soreness since I resumed treatment last month. This is probably best explained as compounding the issues that my team are trying to resolve, with regard to the neck, mid back, low back, hips and knees. I have just been to do more bloods for another rheumatologist today.

We are looking to make a call on proceeding to transplant after my next MRI's and bloods over the next month. My consultant is confident all tests will return normal and negative on changes, due to the short space of time since last MRI's... Only a year since last MRI's.

Thanks very much for your time in responding with your experiences, it is very much appreciated.

Take care.

John

Hi All,

Since 2 months, I am struggling with strong leg problems from the arch of the feets to the top ho the leg, including calf pains and a lot of muscles spasms every where which I manage to fight with prebabilin, neurontin, morphine patches without a lot of success. CML seems to be away from my pains and I tryed to reduce sprycel dosage to 50 mg, whtihout any significant difference. Every doc I meet tell me that if I want to see a true difference I should stop tki for 10 days. The pain is so strong that I have difficulties to walk, I have met several neuros because I suspected other disease (Amyotrophic lateral sclerosis) but every test came back normal so I really begin to think on long term tki use. Afraid to lose my mobility for ever and look for some experiences of leg pain and muscles spasms. Thanks in advance.