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Mom is reducing Tasigna, advice on side effects?

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#1 DJ5627


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Posted 28 October 2017 - 09:00 PM

My elderly mom is going from twice a day to once a day.   She plans now to only take it at night.

She's very frail and the drug is very strong for her.

She's had a difficult time with side effects while on her regular dose, from her appetite, to generally feeling lousy, to pain in her legs for the last year or so, which she thinks could be due to the meds but she's not completely sure.  The drug also wreaked complete havoc on her blood pressure, which was already high, sending it sometimes up around two hundred, with wild fluctuations.   Eventually she was able to triple her blood pressure meds to bring it down to more acceptable levels.


Today is day two of taking one less pill.  She did say she felt dizzy earlier but she seemed to have more energy today than yesterday.


I've read up on the skeletal pain people sometimes experience when withdrawing.   So aside from that, how long should she expect for her body to "adjust" to the new dose? Days?  Weeks?  Months?  What do we need to know to come off safely, especially when it comes to her blood pressure?  Can anyone give her an idea what to expect?

Thank you  =)

#2 Lori's okay

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Posted 28 October 2017 - 09:52 PM

Hi DJ,

I hope some of the more experienced posters answer you.  Especially those who know some about blood pressure.  There are many with tons of knowledge on here!

So I dearly hope the dose reduction will be helpful for her!


Not knowing much about your mom's history (how long has she been taking Tasigna? Is she taking 300mg twice a day cutting down to 300 once a day?  Is her doctor paying good attention to side effects especially the blood pressure?) will share a few general experiences.


So my side effects on Tasigna were awful for the first month, really bad the first 3 months, and difficult then for several years. The point is our bodies adjust slowly to these drugs.  I went down in dosage as you can see in my signature which did really help.  When taking it at night I found that taking it at least a couple of hours before bedtime helped my sleep, and getting a snack after the hour wait helped my stomach.  (About a year and a half ago I started eating a whole food plant based diet, which for me helped the fatigue and frequent illness, have not heard others talk about this.)


She should talk over the leg pain with her doctor.  Some on Tasigna have had Peripheral Artery Disease, and given her blood pressure problems I'd want to check for that.  


Can't say much about withdrawal, as I did not notice that when I reduced, but now am just starting to taper off and have only had glimmers of the withdrawal pain so far.


Sure do hope this improves for your mom.  Glad she has you for support!


DX 09-2011 PCR 8.08 not IS WBC 17 , Began Tasigna 600mg  

in 2012 Tasigna 450mg/day ,in 2013-2017 Tasigna 300mg/day


09-11/ 8.08 not IS

03-12/ 0.054 not IS

06-12/ 0.035 not IS

09-12/ PCRU, 01-13/ PCRU

4-13/ 0.042 IS

7-13/ 0.014 IS

11-13/ PCRU, 04-14/ PCRU

8-14/ 0.006 IS

PCRU: 12-14/ 05-15/ 10-15/ 02-16/ 

09-16/ 02-17/ 09-17/ 

10-17 tapered off 

11-3-17 Stopped Tasigna

1-15-18 still PCRU


#3 cmljax


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Posted 29 October 2017 - 07:54 AM

Hi: I have reduced my Tasigna dose three times in a year.  I am 64 and this drug was quite hard on me for the first 9 months.  It seemed that it took about 4 - 6 weeks after dose reduction to consistently notice a moderation in side effects. I have been on 150MG for nearly 6 weeks and am just now consistently feeling better than when I was on 300 and likewise when on 450 and 600.


I don't think I have experienced any withdrawal symptoms, although with TKI's, who knows what's withdrawal and what's real - LOL. Good luck to your Mom - here's hoping that she can maintain response and feel better

Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%

Tasigna 600MG per day

October 2016                     PCR 22% IS

November 2016                 PCR 5.8% IS

December 2016                 PCR 0.1% IS  MMR!!

March 10, 2017                 PCR 0.006% IS  MR 4.22

Tasigna 450MG per day

April 5, 2017                      PCR <.003% IS

June 5, 2017                     PCR <.003% IS (dose reduction validated!!!)

Tasigna 300MG per day starting June 15, 2017

6-day drug break starting June 20, 2017 due to multiple AE's

July 24, 2017                     PCR <.003% IS

September 18, 2017          Negative, AKA PCRU

Tasigna 150mg per day starting 9/18/17

October 30, 2017               Negative

December 11, 2017           Negative

#4 tiredblood


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Posted 29 October 2017 - 09:56 AM

Tasigna was rough on me the entire time I took it— for a little over two years. Gleevec has been better to me, although not side effect free. My former hem/Onc once told me he had a 91-year old patient on 150mg of Tasigna every other day and had good results.

I quit Tasigna cold turkey and had TKI withdrawal for a while. Felt better the first few days before the withdrawal symptoms began. It was just like in the literature, shoulder and hip pain. There was no question in my mind the cause, but got that all too familiar song and dance from the doc that it's not related to TKI. Thankfully they, now, recognize that the withdrawal sx occur with some patients (thank you clinical trial patients). My BP has gone up on Gleevec and I attribute that to the extra fluid, but that's just an assumption of my own.

I wish your mother well with her dose reduction. Keep us posted.

#5 Trey


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Posted 29 October 2017 - 08:01 PM

As long as her PCR is very low, this is a generally acceptable approach.  Adjustment period is likely about 2 -3 weeks.  There is little information about how to manage dosage of unrelated drugs for elderly patients, but it is an important subject area. 

#6 M.A.


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Posted 30 October 2017 - 01:38 AM

If it were me I would be keeping as close an eye as possible on her blood pressure. She's already felt dizzy which is often a sign of low blood pressure, and given she is frail, she is at risk of falls and serious injury if her blood pressure drops too much. 


She has halved her TKI. Has the doctor halved her blood pressure medication too or even lowered it a fraction? 


If possible, I recommend a home blood pressure monitor and someone monitoring her blood pressure at home at least twice a day until things settle down. 


Sprycel has caused my blood pressure to drop which would normally be a good thing but I need to take a small amount of blood pressure medication (ACE inhibitor) in order to prevent diabetic kidney disease which unfortunately means my blood pressure is now low. Hence my interest in home monitoring.


Hope you get some good support from her medical people.

CML diagnosed April 2016

Type One Diabetes diagnosed April 1980 (age 12)



46.77  April 2016

3.568  July 2016  

0.076  Oct 2016

0.016  Feb 2017

0.0079  April 2017

0.014  July 2017

0.019  Sept 2017

0.011  Nov 2017

0.019  Jan 2018



100mg April 29 - September 22

75mg  September 23 - October 28

50mg October 29 2016 to present

#7 DJ5627


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Posted 01 November 2017 - 09:49 PM

Thanks very much for your replies. I have passed this information on to her.

You know what's odd, she's had a reduced dose (down to 150 mg a day from 300) - and her blood pressure is actually UP.  This med has really wreaked havoc on her BP.

So she just took it and it was about 170, and earlier tonight it was 190.   Before she started the med change, it was down to about 150/160 or so. 

I'm worried about her, because she's very stubborn and unwilling to get it looked at by a doctor before her appointment in a few weeks.   It's very frustrating.   

#8 Buzzm1


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Posted 01 November 2017 - 10:52 PM

Thanks very much for your replies. I have passed this information on to her.

You know what's odd, she's had a reduced dose (down to 150 mg a day from 300) - and her blood pressure is actually UP.  This med has really wreaked havoc on her BP.

So she just took it and it was about 170, and earlier tonight it was 190.   Before she started the med change, it was down to about 150/160 or so. 

I'm worried about her, because she's very stubborn and unwilling to get it looked at by a doctor before her appointment in a few weeks.   It's very frustrating.   

Gleevec served to moderate my blood pressure, lessening my required blood pressure medication; as I reduced dosage, eventually to zero, I have had to increase my blood pressure medication.  

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


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.  


Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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#9 carrie


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Posted 29 November 2017 - 05:11 PM

I started on 800---Yikes. After  a short while,  the doc reduced.

Now I am on 600 and I still don't like the side effects, but I went way down on my numbers.

I am hoping if I stay low on my numbers that he will lower me to 400.

Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0























14.109   Changing to Tasigna 7/7/17


7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.

#10 tazdad08


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Posted 29 November 2017 - 07:57 PM

I dropped from 400 mg per day to 200 mg every other day. Pcr has stayed undetectable and side effects has eased up. They sure didn't go away. I don't like I did pre cml, but I do has less severe side effects. So, instead of 1 pill twice a day, I now take 1 pill every other morning. And sometimes if the side effects are bothering me I skip even more doses. Skipped 3 weeks recently and Pcr stayed at 0. Not saying that everyone will react the same, but that's my story. I was diagnosed 6 years ago. Took Sprycel for one year and then changed to Tasigna to try for less side effects. I stayed on full dose of Tasigna for the first few months. I have been decreaing the dose since. Been on 600 mg per week for over 3 years.

Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!

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