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Newbie -- Tasigna and leg aches at night


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#1 sdl722

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Posted 03 May 2011 - 05:49 PM

Hello everyone.  I am a recently diagnosed CML patient (34 year old male).  I had a physical only 3 weeks ago where my WBC came back astronomically high.  It's been a crazy 3 weeks to say the least (feels more like 3 months)!

Early last week I started taking Tasgina.  The first few days I dealt with minor headaches and general body aches (no big deal as I knew these were common side effects).  A few nights ago I started dealing with leg aches while I was sleeping.  I'd wake up around 1 or 2am and my both my legs would be sore generally below the knee.  It's not a sharp or shooting pain, more of an ache that just won't go away.  I would toss and turn for hours trying to get back to sleep.  When I take an Advil the discomfort would go away.  If I get up and walk around the house the pain starts to go away.  During the day at work I am generally fine.  The pain really only occurs at night.  Last night I took an Advil before going to bed (at the suggestion of one of my doctors) and although I woke up a couple of times at night, I did not have any leg aches.  I did some research online and it seems like the symptoms I have maybe restless leg syndrome (RLS).  I mentioned this to the research nurse and physicians assistant and they said it wasn't a normal side effect and that I should just monitor it.

Before being diagnosed I generally went to the gym and did cardio 3-4 times a week.  Since I found the news I have not done much physical exercise as I am trying to conserve my energy for the time being and also trying to get used to my new lifestyle.  So perhaps it is more that my legs are not as active as they used to be.  This morning I took a brisk 25 minute walk around my neighborhood, as way to start getting back to the exercise routine.

Has anyone else dealt with leg aches durning the night while taking Tasigna?



#2 GerryL

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Posted 03 May 2011 - 07:22 PM

Hi sdl722,

How is your red blood cell count going - restless legs syndrome can be a sign of anemia, your red blood cell count may have dropped a bit till your body adjusts to the Tasigna.

Gerry



#3 Trey

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Posted 03 May 2011 - 08:29 PM

It will take a couple months for the body to adjust to the TKI drug and its side effects.  Leg aches and crazy legs should subside over time.  After that you will be left with a couple/few side effects as your longer term friends.



#4 ADCARSON

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Posted 03 May 2011 - 09:17 PM

I was on Tasigna in the beginning and now on Gleevec.  I had leg crampts with both meds.  I still have them from time to time........and always at night.   I notice that drinking more water during the day helps me.  Seems like if I have had a day when I have not drank as much water as I should they are worse.  Just something to try.  The cramps have gotten better with time....that is for sure but I still get them on and off.   Good luck and I hope they get better.  



#5 CallMeLucky

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Posted 04 May 2011 - 10:11 AM

I'm on Gleevec on had/have the same thing, exactly.  Side effects tend to cycle.  It seems the TKI drugs do something to our muscles, particularly in the lower leg that makes them tight, rubbery, and achey.  Exercise helps a lot with this particular side effect, although it doesn't make it go away completely.  I have found if I do not exercise it get worse over time.  So once things settle down enough and your doctor gives you ok to exercise on regular basis, you can get back to your cardio and that should help.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#6 sdl722

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Posted 04 May 2011 - 10:20 AM

Thanks everyone. I am a bit anemic (low hemoglobin) but it has slowly   been coming up. After thinking about it, over the weekend when I   complained the most about the aches, I probably wasn't drinking as much   as I should have.  I have been drinking more the last few days and   things have been better.  So I will keep that up and try taking more   walks to get my legs moving.






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