came down with CML about 4 months ago....using Gleevic 400....had no side effects until about 3 weeks ago....no am tired all the time....have lost strength in m y left leg....hard to stand up from a sitting position and my left leg drags as I walk......all these things concern me.......is there e=any way to overcome the side effects as my life now "sucks".....getting really down.....Help!!
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Hi,
side effects do lessen over time... but fatigue seems to be a pretty consistent one so you need to pace yourself- at least for the first 6 - 12 months. Conversely many of us have found that the more exercise the less the fatigue, but maybe you need to build that up slowly. The only concern might be what you describe as a 'dragging' of your leg? This does not sound like a side effect that I am familiar with and may indicate some other problem... you should see your clinician about this. It may also be that you need to change to another TKI? At least you could discuss this as side effects between each of the currently available TKIs do differ significantly.
Feeling down at first is pretty much common to all of us I'm afraid, but as you go on with your therapy and your test results show your disease is reducing to much lower levels then you will find your mood will improve as you can be sure you will overcome this disease for the long term.
Best wishes,
Sandy
Hi Pharmatuk,
If you are dragging one leg this would indicate that you should investigate the source of the weakness that is contributing to the problem-it may be joint or muscular weakness that results as a side effect from the TKI that you are taking.
The presentation that was given by Professor Dragana Milojkovic at the 2016 patients and carers meeting in her slide 4 dealt with "Side effects of imatinib therapy" and indicated the following side effects of a musculo-skeletal nature: elevated CK or CPK (creatine phosphate kinase), myalgia (muscle pain) and arthralgia (joint pain).
Your symptoms are similar to mine and indicate that you may have a condition called myositis which is inflammation of the muscles and usually affects the posterior muscles to the hip joint, the thigh and muscles surrounding the knee Myositis is caused by an infection or an auto immune issue or in our case side effects of medication.The condition will affect your balance and you may eventually be prone to falling and you may need to use a stick to help you walk.Basically the muscles are being attacked and weakened.I still find stairs a challenge and walking down steep slopes frightens me.
I have had the BNP blood test (Brain natriuretic peptide) to see if the muscles of the heart are being affected. An extreme and severe condition is Rhabdomyolysis where the CK score will be very high and the brain may be at risk of being swollen- imatinib in rare instances has caused this in some patients.
Myositis is very difficult to treat and the usual remedies are specific physio to strengthen the muscles of the hip,thigh and surrounding the knee.The more natural remedies involve diet and avoiding processed foods and eating a.g.salmon,advocados,turmeric etc as these are anti inflammatory My specialist said that the solution is to remove the offending source i.e .the drug imatinib but that is not an option as currently am on high dose imatinib 600 mg daily. Mild walking may be taken but excessive exercise is not suggested as this leads to further weakness. So if your CPK is elevated it would for sure be myositis as your problem and in your case like mine drug related.
I have an hour each week of reflexology and acupressure and that helps the stiff muscles in the calf but next week will go back to see my physiotherapist to refresh on those strengthening exercises I should be doing as I am still walking with a bad limp in the right leg.
Best wishes and I would have it checked out
John