Just wondering if anyone here has experienced TKI withdrawal syndrome-like symptoms with going to 1/2 the dose of their TKI. My hem/onc referred me to a rheumatologist who prescribed yet another NSAID and cyclobenzaprine (a muscle relaxer). I don't feel like there has been any improvement. I told the rheumatologist that my symptoms are very similar to what I experienced with TKI withdrawal, which is said to be like polymyalgia rheumatica, but the rheumatologist dismissed PMR, saying I'm too young to have PMR. It describes my symptoms, IMO, however.
Lower dose and TKI withdrawal syndrome-like symptoms
Started by
tiredblood
, Dec 25 2016 08:35 PM
6 replies to this topic
#2
Buzzm1
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Posted 25 December 2016 - 11:51 PM
Tiredblood, while reducing my tki dosage over the past two years, I went through a full year of withdrawal symptoms in my shoulders, arms, wrists, and hands. It began in my shoulders and worked its way down my arms into my wrists and hands and then worked its way back up into my shoulders. It ran the full gamut of muscle, bone, ligament, tendon, and nerve pain. Having finally ceased my reduced tki dosage on Oct. 16, my shoulders have again flared up with rotator-cuff symptoms reminiscent of my previous experience. It helps take my mind off the worry about my tki-aided kidney and peripheral artery problems. I believe that older adults, such as myself, are more vulnerable to the damage from tki's so the sooner we reduce, or cease, our dosage, the better.
Note: I have significant prior damage to my C4 through T1 vertebrate that impede on the nerve roots that add to muscle/nerve related problems in my upper back, shoulders, arms, wrists, and hands.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
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#3
gerry
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Posted 26 December 2016 - 01:35 AM
Buzz - can take up to two years for symptoms to ease. Have you spoken to your doc about maybe a short time dose of predisone. Seems to help.
#4
hannibellemo
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Posted 26 December 2016 - 08:37 AM
tired blood,
My husband was just dxed with PMR at 67; it would be very unlikely at your age. Not impossible, but if your pain is felt anywhere other than in the muscles of the shoulder and pelvic girdle areas you can definitely rule that out. To put your mind at rest you could have them do a sedimentation rate test to see if there is an extraordinary amount of inflammation in your body.
I don't remember having any withdrawal symptoms when I abruptly stopped Sprycel due to pleural effusion. But, what I do remember is not feeling as good as I thought I would (like I did when I had to stop Gleevec for several weeks due to liver toxicity). AS a matter of fact, on 50 mg I still have side effects, just not as strong, nor do they last as long while cycling through.
Good luck and I hope you find some relief soon!
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
#5
tiredblood
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Posted 27 December 2016 - 12:06 PM
The shoulder pain is the worst by far for me, buzzm1. Hanibellimo, did your husband have the giant cell arteritis (GCA) that some times accompanies PMR? My ESR and CRP were elevated. I'm due to go back to the doc in a little over a week.
#6
jdpemberton
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Posted 28 December 2016 - 10:39 AM
my cousin is 50 and was just diagnosed with pmr. With the human body, anything is possible!
#7
hannibellemo
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Posted 28 December 2016 - 06:09 PM
tiredblood,
No, fortunately he does not, at least not now, I believe it is still a possibility to develop it.
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
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