13 replies to this topic

[martap999]

Hello to all my CML friends - I have a question about Sprycel and arthritis - I have been taking Sprycel since March when I was first diagnosed - started at 100 mg as of October lowered to 80 mg - my question is this : several months ago I noticed that my ankle and my knee started to bother me but I really paid no attention to it - as of approximately 2 weeks ago the pain has increased to the point where walking is very difficult - I thought perhaps arthritis related to the Sprycel and called my doctor - he said there is no connection between Sprycel and arthritis ( or pain in joints ) - i would like to know whether anyone knows of a connection between the meds and the pain in joints -
Also I have read that blood marrow biopsy is the way in which CML is diagnosed - I have never had one and the only reason I even know about this is from readings here - I am concerned about my doctor now - is a bone marrow biopsy absolutely necessary apparently my doctor does not think so - looking forward to your replies - thank you guys so much - Marta

[CallMeLucky]

I have a lot of joint problems and only 43. Been on Sprycel 4+ years. Knees, hip, shoulder, etc.

[rcase13]

I guess I am the opposite. I am 45 and have had to deal with arthritis in my hands and knees most of my adult life. When I started Tasigna my arthritis symptoms greatly reduced. It is the only positive thing about CML for me.

[Trey]

Joint pain is relatively common for Sprycel users.  The pain often decreases over the longer term. 

 

A bone marrow biopsy (BMB) should be done at diagnosis.  Read about BMB here:

http://treyscml.blogspot.com/

[scuba]

Curcumin is very effective against joint pain due to osteoarthritis:

 

http://www.lifeexten...mmation/page-01

 

Arthritis runs in my family - once I started taking Curcumin, arthritis faded away. I haven't had any arthritis issues in several years.

 

Not sure joint pain is any more common for Sprycel users vs. any other TKI. 

[Trey]

Another thought to consider is that joint pain is often not arthritis.  There are a number of possible reasons for joint pain.  TKI drugs can induce joint pain which usually is not arthritis.  And often it is the ligaments and tendons which ache, which can also be caused by TKI drugs.  People like rcase and Scuba have arthritis, but many of us just had/have TKI induced joint pain.  So it is a good idea to have a proper diagnosis of true arthritis.

[jmoorhou]

I got gout when I took diuretics for high blood pressure while on Gleevec.  I stopped them and gout went away...

[Buzzm1]

TKI Withdrawal Linked to Osteoarticular Pain http://bit.ly/1OdZYdX

 

[Billie Murawski]

Hi Marta, I'm on Sprycel 20 mg and I get joint pain, I don't have arthritis. It's odd that your onc didn't do a bmb.

                                                                                                           Good luck Billie

[martap999]

I am changing doctors - found a great one at university of Miami - Sylvester cancer center - i had told my last doctor that I did not feel good - run-down, tired, joint pain - he totally ignored my question !!!!- that was the end of him !!- will keep you guys posted on my new onc - wish me luck !!!

[tiredblood]

Hello to all my CML friends - I have a question about Sprycel and arthritis - I have been taking Sprycel since March when I was first diagnosed - started at 100 mg as of October lowered to 80 mg - my question is this : several months ago I noticed that my ankle and my knee started to bother me but I really paid no attention to it - as of approximately 2 weeks ago the pain has increased to the point where walking is very difficult - I thought perhaps arthritis related to the Sprycel and called my doctor - he said there is no connection between Sprycel and arthritis ( or pain in joints ) - i would like to know whether anyone knows of a connection between the meds and the pain in joints -
Also I have read that blood marrow biopsy is the way in which CML is diagnosed - I have never had one and the only reason I even know about this is from readings here - I am concerned about my doctor now - is a bone marrow biopsy absolutely necessary apparently my doctor does not think so - looking forward to your replies - thank you guys so much - Marta

I was diagnosed based on one PCR test, no BMB.  It was what Trey said about a BMB being necessary for a complete diagnosis that kept bugging me.  My WBC and neutrophils continued to remain elevated despite my miraculous 0.000% at 3 mo. on a TKI.  So, I went to a new doctor who offered me the option to go off of the TKI and see if I loose my response and will do a BMB at 6 months out.  New doc believes I may have a different diagnosis.  Sad thing is that I had three doctors tell me the the single PCR test was sufficient for a CML diagnosis.

[Judithb]

I guess I am the opposite. I am 45 and have had to deal with arthritis in my hands and knees most of my adult life. When I started Tasigna my arthritis symptoms greatly reduced. It is the only positive thing about CML for me.

Rcase13

 

Tks so much for your post.  I am lots older than you and on Tasigna for last 10 weeks my arthritis is also much, much better.  Anyone know why?  of course fire ants in the hair makes up for no joint pain.

[Gail's]

Achy today. Stupid right arm feels like it's falling off. Haven't done anything new so figure it's achy with gleevec again. Love/hate relationship with this drug. But trying to stick with it since I'm nearing retirement hoping the $ hit will be less by then.
Positive news (sad too but mostly positive) filed for legal separation today. Also a move to protect finances.

[Buzzm1]

Achy today. Stupid right arm feels like it's falling off. Haven't done anything new so figure it's achy with gleevec again. Love/hate relationship with this drug. But trying to stick with it since I'm nearing retirement hoping the $ hit will be less by then.
Positive news (sad too but mostly positive) filed for legal separation today. Also a move to protect finances.

Try using your left arm/hand instead of your right arm/hand whenever possible ... it should help. I take one naproxen sodium per day when the pain exceeds my threshold; which reminds me...

 

my mouse is now plugged into the lefthand side of my keyboard and I now drink my coffee left-handed (I drink a lot of coffee)... just accidentally broke my absolute favorite 1.5lb. 20oz. glass mug; probably for the better ...