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Stopping Imatinib for one month - Insomnia related.

I have suffered with Insomnia for a very long time, and wondered is it me or my medication? I have had CML for over 9 years, and am at a PCR level of 0.01 in very stable MMR. I never sleep through the night, and am fatigued in the day because of this. Over recent months I have also had regular aches and pains at night in the stomach & back, and some night sweats. My mood has suffered too, but that could be life events like anyone else. I would say though, that I have always been very optimistic and not daunted by my CML, BUT in case it helps others I'm sure that I have suffered out of charachter periods of depression that I have just managed myself ( I did find it difficult to admit this in the past)

I thought I would let you all know in case anyone else is going through this, and to see what happens as I stopped taking Imatinib two days ago having discussed it and having taken the advice of Dr. Marin at the Hammersmith. I asked if I could try it for three months, but he advised against this saying that it's too long. This will be the longest period off the drug since 2004, and I am quite excited at the prospect of feeling 'normal' again. Dr. Marin warned of the dangers that some patients faced having liked being off their medication, and then continued to take unathorsied Drug free periods risking relapse. I go back next month to report what has happened, and to have my bloods checked. I would be interested to hear of others experiences.

Best wishes,


Hi Phil, as you have a stable MMR at 0.01% and you will be monitored closely then you are probably right to try this 'experiment' with stopping IM to see if the drug is the cause of your insomnia. However, as you have said already- this can be caused by all sorts of things. I also suffer with sleepless nights on occasion and I have not taken any therapy since my SCT in 2003.
As you are having regular blood tests you could ask Dr.Marin to assess your levels of magnesium and Vit D (especially as you complain of of back pain etc. You might also ask him to test your thyroid hormone levels - especially T3- as your symptoms could also be from an under-active thyroid.
Having said all that- diagnosis of CML is an event that changes the lives of most of us.... as well as those close to us. I think (some) men in general do suffer a lot from 'being brave' and thus do not find it easy to express their emotions.

I hope you find some relief during your stopping experiment... I also hope that you maintain your MMR during this time. Please keep us informed of your results and whether you find your insomnia and pain subside.


Hi phil , I'm seeing my specialst on the 27th of this month,about changing ie or stopping ,at the moment im on imatinib.I was dx in dec 2009 ,if I change i would like to go on pasatanib ,not sure I have been at MMR long enough to stop.why is your dr not thinking about stopping altogether ,why just a month ,and what has he said about any pitfalls in stopping? All the best tony.

Hi phil just like to say I got the TK wrong,I meant disatinib not pasatanib .sorry tone

Thanks Sandy & Tony. I will take your advice Sandy, and will raise the issues with Dr. Marin when I see him next month. Tony, he suggested one month only as the drug will be out of my system by now and give enough time over the next month to see if it is Imatinib that is causing my problems. I hope it is to be honest, and I will then ask to change to one of the second generation drugs like you, Datasinib, Nilotinib etc. I asssume that you are experiencing similar problems then? He didn't see any real pitfalls over a month, but was concerned that three months would be too long I would risk losing my remission.



Hi again phil, the reason's for change is because I'm experiencing balance problems ,not sure it is the imatinib but more Sure about the fatigue which will if cured will help with balance ,also I get cramp , eye bleeds,other than these no other problems, the fatigue being the worsted thing.all the best tony.

Hi Phil,

I'm very interested to hear your experience. I also have problems with insomnia and poor 'quality of sleep' and fatigue during the day. I've been on Imatinib for 5 years. I'm hoping to try switching to Nilotinib to see if this has a better side effect profile for me.

Have you seen the article (linked from the home page) about 'Change in Grade Low Grade Side Effects in ph+CML cp patients after switching therapy from IM to NIL' ? It appears that quite a few people find the side effects of Nilotinib easier to tolerate than those of Imatinib.

I would be interested to have a period off treatment altogether to get a 'baseline' It's often difficult to be certain what symptoms are due to the drugs and what are due to getting older!

I'll be interested to hear how you get on with your 'drug break'

Best wishes


Tony, I also get eye bleeds every month or two, some worse than others. HH referred me to the Eye Specialist, and all was fine. He told me to go back when I get a bleed so that he could see it livetime, and work out if any vessels needed cauterising, but it hasn't happened for a while now. About nine months ago, I also had severe balance problems. Saw the GP, and was sent to the hospital just in case. Given meds, a waste of time. Diagnosed with 'Benign Positional Vertigo' basically debris in the ear drum. Put up with it until I saw the ENT, who got me to do some exercises/movements - completely stopped it. Worth you investigating, as it was terrible, and lasted ages.

Peter, thanks I have seen the article and that was what got me thinking about stopping and looking at the alternatives.

It's been five + days now off the treatment, and too early to draw any conclusions. No noticable change in my sleep pattern as yet, but I definitely feel more energetic.



Slept fine on Imatinib, but bone pain, cramps and fatigue were over-whelming. Coupled with the fact that for me, this drug was not being particularly effective, I changed to Dasatinib. However, I get no sleep whatsoever on Dasatinib (others share this side effect too) and the only symptom that has gone is the issue with cramps. I guess we're all different, but I just wanted to let you know that sleep difficulties appear to be more common with Dasatinib than any of the other TKI's.
Oh, I think balance problems are something that we're just starting to discuss on here and mine is pretty awful!

Hi phil , can you discribe any of these exercises to me ,very interested as I'm going through a lot of issues with work off for 5 months,reported for being drunk on the job ,sent home for a seconded time ,something forgot to say sound slured as well as balance problem.have tried tablets and exercises like stand on right leg then left and do the same with eyes shut,did not help did this for 6 months,I feel at end of my tether,any help would be appreciated. All the best tony .

Hi Tony,

Suggest you go to your GP, and ask for a referral to an ENT at the hospital. If you check online for Benign Positional Vertigo, you will be able to find out much more about it. The ENT asked me to sit on the couch, and then supported my weight whilst lowering me at speed downwards. Stay there, then up again. Similar movements left and right I think it was. The idea is that the debris is disloged. You then have to sleep inclined on several pillows for the next few nights. It worked, and was a major relief. You may well have this, and only the ENT fully recognised and treated it.

Regards & good luck,


Thanks Vickie, all helpful and things to consider when I go back.



Hi Phil and all

My boyfriend has trouble sleeping too. He has been on imatinib for 9 months. can you guys update your experiences and advice?

Thank you so much