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Leg pains

Hi everyone,

im new to this site as it was recommended by my consultant. I was diagnosed with CML in June this year and have been on 300mg of Nilotinib twice a day since. I was doing well but have since had other problems, possibly caused by the Nilotinib. Under active thyroid and anemia to name a few. 

One thing that has baffled my consultant is that I get very bad leg pains and breathing difficulties and find walking up stairs, or walking too fast extremely difficult. 

I had the pains prior to diagnosis and he thought it was due to the cml but my blood levels and bone marrow levels are now good. 

Does anyone else have this, or can anyone offer any advice? He has now put me on a course of steroids, for muscle pain but I’m not sure it is muscle pain. It’s very hard to explain the feeling 

thank you

Toni

Hi Toni. That sounds shit.

I had really bad pains in my limbs in the early days of my CML diagnosis. Mainly in my legs, but sometimes my arms. There was a constant dull ache, and fairly frequent lightning bolt pains which were what really what pushed me over the edge.

I was on imatinib, and my doctor felt that nilotinib was very similar (molecularly) to imatinib so changing to that would not help. I came off imatinib and within a week the pains were gone.

I can't tell you that you are suffering from the same cause, but a week or two off TKIs to prove or disprove if the drug is causing the problem is usually worth doing. Have you discussed that with your doctor? Sometimes doctors try shots in the dark to fix the problem before getting to the bottom of the problem itself.

David. 

Thanks David. I was having the pains well before diagnosis, one of the reasons I was under investigation when they found I had CML, so they just assumed the pains were related.  But 8months on and the leg pains and walking difficulties haven’t got any better, which is baffling. The steroids are as he thought I may have polymyalgia so to give them a go for a few weeks to see if they make any difference. I’ll keep you posted, and thank you for the reply. 

i never had leg, hands, elbow pain before meds.  I was on 600 Imatinib for 28 months.  Oncologist told me "whatever joints you use is what will hurt"  Right after going to bed, my legs would tie up in knots, causing me to tears.  My elbows so sore, it hurt turning a door knob. My fingers would knot up and look deformed.  Now on 400 Imatinib, I have some relief.  Mine was not daily, except the elbows.  Wish I had the answer for you, but you are not alone.  

Hi there,

For some it seems that TKIs will give side effects involving muscles and joints especially imatinib.I am a veteran dx 13 years ago and have just experienced my third major flair up of severe pains in the muscles of the hip joint and with dreadful pains down the right leg to the knee with muscle weakness and loss of mass.It has lasted for 4 weeks this time;we thought it was drug induced myositis or inflammation of the muscles but now we are not sure.Have just had an MRI and some nerve conduction tests but awaiting results.The only relief is one of those heat pads that is warmed up in the microwave for a few minutes and also roll on deep heat.NSAIDS may help to dull the pain and have used a version of diclofenac but beware that this might lead to bleeding in the stomach if not taken with food.I advise that one avoids ibuprofen as research at University of Adelaide has shown that this in tablet form or as a spray will limit the uptake of imatinib and other tkis.I have been on imatinib 600mg for the last 2 years but now with some nearly undetectable PCR s have reduced to 400 mg daily so hopefully this might help.

I am also focussing on anti inflammatory foods as a remedy and tend to go for a plant based diet in the main plus alcohol free drinks.Beware that inflammatory foods might be related to the development of BCAAs (Branched Chain Animo Acids) with cancer progression in the form of new mutations-see the post from LabNoir on this. If you google anti inflammatory foods there is a wealth of advice offered.

Finally in response to nightime cramps and muscle joint inflammation exercise and strengthening is vital so physio might be useful.One could try calcium rich foods and a magnesium supplement or spray on topical magnesium or footbaths with epsom salts-give it a try.One has to keep moving otherwise mobility and balance is threatened.

Doe anyone out there have other solutions please or is this the price some of us have to bear as a result of taking a life saving drug?

P.S So far none of these problems show up on imaging that I have had ie MRIs and X rays

Best wishes

John

Thank you Ray, I hope you are now getting some relief? 

My pains are worse in the evening, usually walking to the station on my home from work. 

Hi Toni

I actually did the clinical trials for Imatinib in 2001 o,one of the main side effects they found in the trial was the drug could cause muscle cramps,I now take Quininne Sulfate 300 mg ,maybe your ask your medic about tjis,hope that helps .

Same problem.....

muscle cramps, lang pain...
Diagnosis (end of 2007)

400 grm Imtinib.....

But

After 8-9 months pain gone automatically......

Last one year one time muscle cramps....... (sleeping time)

This is my experience..............