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Arthritis and cml


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#1 lala

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Posted 05 December 2011 - 03:34 PM

Hi....this is year six for me.....My shoulders, knees and elbows ache while I am sleeping. They wake me up throughout the night.  I am 55.......is it my age or is it related to taking my pills before bed?  Thanks, Lala



#2 Taylor

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Posted 05 December 2011 - 04:18 PM

Hi Lala,

I'm 25 and taking Tasigna, so I have a morning and evening dose.  I notice that when I wake up, especially if I feel I've slept like a log, my joints are stiff and sore, mainly my fingers, wrists, and ankles.  After I get around they feel fine though.



#3 Trey

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Posted 05 December 2011 - 06:11 PM

Neither the CML nor TKI drugs cause osteoarthritis.  But the side effects can feel like it at times.  The difference is that the pain should go away either over time or after drug cessation.



#4 Jamar

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Posted 06 March 2014 - 12:36 PM

I am 42 and just got word that I have the start of arthritis in both big toes.

I was worried that I was experiencing the onset of gout. The Podiatrist said it is what is classified as stage 1 arthritis (the least severe) and not uncommon for men my age.

never a dull moment



#5 Frogiegirl

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Posted 06 March 2014 - 01:01 PM

I was recently diagnosed with Rheumatoid arthritis.....yay me! I hurt all the time. Not sure what they can do about it since I cannot take any steroids(I.b profren, or anti-inflammatory) Plus my job is extremely physically demanding. I take lots of hot baths for some minor relief. I'm waiting for my CML doc and R.A doc to converse to see if there is anything they can give me for the pain/progression of the R.A....... I too take the Tasigna, UUGGHHH I'm ONLY 31!!!


Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#6 Trey

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Posted 06 March 2014 - 01:10 PM

Not saying this about any individual case here, but docs can mis-diagnose TKI side effects pain as several things such as arthritis, fibromyalgia, etc.  The key is that if the pain subsides during an extended break or dose reduction (after the CML is well under control) then it is side effects, not any of the other things.  TKI drugs can change the way bones and joints utilize minerals necessary for bone and joint health.  But of course, anyone can also have multiple ailments. 



#7 Jamar

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Posted 06 March 2014 - 02:19 PM

Fortunately my podiatrist is taking a conservative approach and we are just going with a cortisone shot to start.

The xrays showed that I also have a couple bone spurs by the affected joints.



#8 mariebow

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Posted 06 March 2014 - 05:05 PM

I agree with Trey I am 60 years old now, and I have arthritis for years, but I do noticed pain in the middle of my shoulder, when the bra line hugs the shoulder, which is a new pain but I have had it ever since the summer.



#9 GerryL

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Posted 06 March 2014 - 11:45 PM

Hi Frogiegirl,

Talk to your doc about taking fish oil for the Rheumatoid arthritis http://www.medpageto...Arthritis/42007

I took fish oil with Gleevec without any issues. I continue to take fish oil to bring my cholesterol down. Can't find any interactions between Tasigna and fish oil, but best to talk to your doc first.



#10 tazdad08

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Posted 07 March 2014 - 04:05 PM

I have started going to an ortho dr now. I KNOW that is is chemo related, but they want to try injections, cartorizing nerves, and exercises. The bad thing is that a Hydro is the only thing that I have found that helps me


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!


#11 Susan61

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Posted 07 March 2014 - 08:20 PM

Hi:  I am suffering so bad with Arthritis.  Its in my spine and knees real bad.  Cannot get comfortable at night to even sleep. Its in my ankles also at times.  I am gettin lumps in a lot of my fingers that hurt.  I was told I have many bone spurs in the spine, and deterioration of my discs especially at the tailbone.  I am ready to get a cane to walk

I am hoping this brutal cold weather stops soon, and maybe I will get some relief.

I am just completing a series of Ortho-Visc shots in the knee, but its not doing a thing for me.  I had better results with the Cortisone.

    I know I am 66 years old now, but never thought it would get to this point.  I can feel for everyone who is experiencing this type of pain.  It is so debilitating.  I have the pain in both shoulders, and that could be Bursitis which you might have.

   Take Care

Susan



#12 mariebow

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Posted 07 March 2014 - 11:34 PM

Oh Susan, I hope you can get better relief, I still suffer with my ribcage,and if I do some bending I will suffer for it later on.  I do not complain about it to my onc, because he wants to switch my tki's.  I do not want to I do not want other side effects. Gail






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