38 replies to this topic

[KathyF]

I stopped gleevec last October after 11+ years on it.     My osteoarthritis was a small problem for me -- but since going off of the drug, I have increased discomfort in my joints.    I read an article that mentioned this happened to some in the STIM trials.

 

Has this happened to anyone on this board?     Do you have increased joint pain since going off of gleevec (or another drug)?   

 

I'm going to ask my oncologist, but wanted to post here too.

 

Thanks for any feedback!

 

all the best,

Kathy

 

[Trey]

There is a documented "TKI withdrawal syndrome" which causes reverse side effects.  But in this case it is probably not a reverse side effect but in fact Gleevec was likely keeping your arthritic joint pain depressed.  Gleevec has demonstrated anti-rheumatic activity.  When you stopped the drug you took away the "medication". 

 

http://www.ncbi.nlm....pubmed/12952023

[Billie Murawski]

Hi Kathy,

Boy that's a new one for me but it sure makes sense. I was on it for three years and I had no joint pain at all, my problem was gastroentestrial problems, but I had problems with that before G. After 3 years I went on Sprycel  and I think about two years ago is when my joint pain started it has gotten progressively worse, nothing I can't handle mornings are rough, when I get out of bed my body forgets how to move even the bottom of my feet hurt, after about 10 minutes I start moving around better.

I never gave it a thought that G helped boy we sure learn something new everyday. That's what I love about this board if you have an unusual problem and post it chances are someone else has had the same thing and can explain it to you. I can't tell you how many times I had weird feelings and I got myself into a panic then I got on the board and there is always someone there who has had the same thing. So I can go to bed and sleep and lo and behold I wake up and I'm still alive. I take 90mg of cymbalta a day I have been on it for years for depression but it's also an anti-inflamatory too and it really helps me. If I don't take my daily dose I can barely move the next day. Good Luck Billie

[KathyF]

Trey -- thanks for the info.    I don't have the symptoms of RA, and have always believed my joint pain to be osteoarthritis -- but will discuss with doctors.     Also, these studies were done in 2003 and I don't see any references post 2006 to potential help with RA symptoms with gleevec use.    But it's all very interesting and I thank you for pointing me in this direction.

 

Billie -- Yes, we sure do learn something new every day!    I'm glad that the cymbalta is helping you.    It's awful to have such discomfort in our joints.     Some days I feel like I'm 102 which in itself is depressing so I may look into cymbalta.   Good luck to you, too.

 

Kathy

[gerry]

http://www.arthritis...ontent/11/4/120 

[educatorsusan]

I think I am going to be a little off topic here and do not know how to create a new subject.  Maybe you are able to help me.  However, I have a different symptom and have only been off Gleevec for 5 weeks.  At the very beginning, I have had night sweats...badly!  All over again.  But my 4 week PCR showed undetectable!!!  Anyone else have this symptom?

 

Hugs,

Susan

[tiredblood]

Since stopping Tasigna, I've had terrible joint pain-- much worse than the joint pain I had while on it.  Of course, it could be something else causing it.  I sleep with a heating pad most every night.

[Alajazz]

The reason I started looking on forums such as this recently was this very reason. After 15 years on Gleevec and stopping for less than 3 months, my joint pain has been really bad with no signs of lessening. As others it is worse when trying to start the day. So far, have only taken Aleve and Advil, but need something that can help. My doctor said it should get better but no way to know that I guess.

It was mentioned that Gleevec likely has some positive effects on the body other than for CML. Over the years, I have often suspected this. In general I've had excellent health, rarely had colds, always measure a low blood pressure, and have a positive mental state. Since stopping I haven't felt like doing much, tire easily, with lung congestion and mild persistent cough. I'm not ready to throw in the towel yet since Gleevec is likely not needed for me to remain PCRu. But still I wonder whether it's better to live with it or without it.

[Buzzm1]

there is still much to be learned about the long-term side-effects of TKI's, including withdrawal side-effects 

tyrosine kinase inhibitor toxicity

 

if I am successful in reaching discontinuation on July 4, 2016, and then maintaining PCRU through the critical first six months, you are welcome to my remaining Gleevec stash.  

[Gail's]

Alajazz, maybe the bright spot is the $10,000+ a month we save! But I'm also thinking this stuff is pretty powerful and if causing such side effects, what else is it doing to us??

[Alajazz]

Buzz and Gail - I cannot disagree. These targeted drugs were designed for a specific disease but as experience and research has shown, can affect other body functions and diseases as well.

Speaking of long term effects and toxicity, that was a question I often asked my doctors at MD Anderson over the years. Early on they would just say that it was too new and more time was needed to determine that. Later they emphasized that controlling the disease is more positive than the side effects are negative. In my case, I had to agree and moved on to enjoy and make the most of my life. CML faded as a primary concern as I saw my blood tests and BMAs come back negative year after year. It was only recently that I thought it prudent to revisit the state of knowledge around CML treatment. My stopping experience and renewed awareness has been enlightening. Glad I found this forum, too. I'm learning a lot from you all.

[Buzzm1]

Buzz and Gail - I cannot disagree. These targeted drugs were designed for a specific disease but as experience and research has shown, can affect other body functions and diseases as well.

Speaking of long term effects and toxicity, that was a question I often asked my doctors at MD Anderson over the years. Early on they would just say that it was too new and more time was needed to determine that. Later they emphasized that controlling the disease is more positive than the side effects are negative. In my case, I had to agree and moved on to enjoy and make the most of my life. CML faded as a primary concern as I saw my blood tests and BMAs come back negative year after year. It was only recently that I thought it prudent to revisit the state of knowledge around CML treatment. My stopping experience and renewed awareness has been enlightening. Glad I found this forum, too. I'm learning a lot from you all.

Alajazz, no doubt, as Trey has repeatedly said, TKI's suppress the effects of numerous other maladies, such as arthritis, high blood pressure, etc., that come back to haunt us when we discontinue TKI's, or even just reduce the dosage.  While it's true that more time is needed to determine withdrawal effects from most TKI's, Gleevec has been around long enough to have developed a knowledge base on these issues.  That information doesn't seem to be readily available.  While TKI's, in controlling CML, affect each of us differently, they can also create major problems for at least some of us.  I'm really worn out from spending so much of my life "home doctoring" (time and effort spent dealing with illness/injury/pain, mostly pain) and that was even before I was diagnosed with CML and began taking Gleevec, which seems to compound and exacerbate so many of the issues I am dealing with, if not creating new issues.  Makes me determined to try and get off of Gleevec if at all possible.

[Alajazz]

OK Folks, after a lengthy absence from the forum, I'm back to give an update on my Gleevec withdrawal pain. Right now, I am 10 months into the LAST stopping trial and all tests have been pcru. However, my quality of life during that time has been miserable. The joint pain and fatigue has been such that I'm only able to do minimal activity each day, though have been diligent in giving it a try consistently everyday. Medication consists of Aleve and Advil though my onc had me on prednisone for a month and that helped. After the steroid cleared my system, all the pain and fatigue returned full force.

It has been a difficult decision to make but now I'm about to do the unthinkable, and restart Gleevec. After studying all the literature I've learned that my experience is not unique but apparently worse than the norm. Although the symptoms may eventually subside I really need to find out if restarting might restore my wellbeing, which was mostly good during the Gleevec period (about 15 years). I'm over 65 and strong willed so my endurance in current state could be sustained. It seems that restarting could provide more info to use in the future and could also stop again as we learn more

It would be nice to hear comments from others on this subject. It's a tough decision.

[gerry]

This is an issue for some of the members of my TFR Facebook group and there still doesn't seem to be an answer for it. It seems the longer you are on the Gleevec the more prone you are to it.

I was only on Gleevec for three years, and had no issues when I stopped. But I did find that I couldn't take a statin anymore for my cholesterol as it caused a lot of muscle issues, which it hadn't done prior to Gleevec. Though as Buzz pointed out it might not be related.

If it were me making your decision I would start with the 100mg and split them first up. I'd be aiming to take the minimum amount of Gleevec to control the pain.

Good luck. Let us know how you go.

[Buzzm1]

Alajazz, surely there are less expensive, and better, pain medications, than Gleevec to help you deal with your withdrawal symptoms.  Plus, how do you get insurance, and your oncologist, to approve a Rx for a disease that you are now testing negative for?  Not to mention, that even if they do, now that you are on Medicare (if you are), that first TKI prescription of the year is going to be awfully expensive.  

 

That said, fifteen years is a long time to be on a toxic med; I commiserate with you as I have experienced any number of fairly severe withdrawal symptoms during my own Gleevec dosage reduction, despite less than half your duration.

 

Hoping better days are ahead for you.

[tiredblood]

As I sit here with my heating pad, my nightly companion, on my aching body, I have to say I've felt much worse while on a TKI. Going off of it was unpleasant too. I think I've had less colds since on it.

[Alajazz]

Right now the doctor is recommending a dosage of 300 to start with, though I meet to discuss that tomorrow. If that helps then hopefully dosage reduction may work to find a balance.

Buzz, your dosage reduction history is encouraging. The fact that I was on 600 mg for most of my time on Gleevec surely was a contributor to my condition. Thankfully, I was reduced to 400 in the last 3 years and noticed an improvement in side effects. Regarding cost, I have been very fortunate to have Novartis assistance that was offered to those in the original clinical trials prior to FDA approval.

[Buzzm1]

Alajazz, what was the reasoning for keeping you on Gleevec 600mg for such a long time?  When did you first achieve a negative PCR reading?  Have you had the same oncologist during your 15 years?

 

Is the doctor, you are consulting with regarding restarting Gleevec, part of the LAST study?

[beno]

Trey -- thanks for the info.    I don't have the symptoms of RA, and have always believed my joint pain to be osteoarthritis -- but will discuss with doctors.     Also, these studies were done in 2003 and I don't see any references post 2006 to potential help with RA symptoms with gleevec use.    But it's all very interesting and I thank you for pointing me in this direction.

 

Billie -- Yes, we sure do learn something new every day!    I'm glad that the cymbalta is helping you.    It's awful to have such discomfort in our joints.     Some days I feel like I'm 102 which in itself is depressing so I may look into cymbalta.   Good luck to you, too.

 

Kathy

Before you begin Cymbalta, you should look at the withdrawal issues associated with it.  It works well, but it is very hard to quit and if you start it, you should plan to stay on it for a long term.  My wife took it for about 18 months and then her doc wanted her to switch.  They ended up checking her into the hospital because she couldn't endure the withdrawal on her own.  She was really upset the doctor who prescribed it never told her about the withdrawal problems until after she had been taking it for a year.  Just please google Cymbalta withdrawal before you begin.

[Alajazz]

Buzz, in response to your questions:
After diagnosis I went to MD Anderson since they were among most advanced in CML studies. After failing on interferon + Ara-C I qualified for TKI trial with dosage at 600 mg. That succeeded within a normal time so Dr Talpaz kept me at that level. We had a mutual understanding that I was still a research subject over the years even as they developed the more advanced TKI's. I guess it is clearer to me now that long term effects of Gleevec was an important topic for researchers. About 3 years ago I switched to another center that was more accessible than Houston since my condition was stable and had been pcru for years. It was at the new research center that Doc recommended 400.

My Dr also told me about LAST that she is coordinating at this center so I signed up. So now I've discovered that "Life After Stopping TKI" is miserable. I owe my life to this drug so my participation in the studies to further the body of knowledge is not a problem. In this next step I guess we will learn more.