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Side effect of Imatinib?

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Hi everyone,

    I have been taking Imatinib 400mg x 3.5 months. Everything was going fine & for the past 2 weeks, things have been awful, bone pain, uveitis in right eye, headache, feeling “hung over” all the time, cold, so so so so tired, general anxiety and crying A LOT because I’m so overwhelmed.It feels like I can’t do anything anymore or care for my 2 little ones like I did before. I don’t know what is happening!? Has anyone experienced this? Does this mean my body doesn’t do well with the medication anymore or just starting to experience this because I’ve been taking the medication for a longer period of time!? 
thank you 

Sandra 

Sandra,

Known Side-effects
Gleevec Imatinib http://bit.ly/1SWEl7W

if things continue see if your onc will allow you to split your dose taking half in the morning and half at night to see if that might help.   you could also talk to your onc about reducing your dosage to 300mg.  What was your three month PCR reading?

When I was on Gleevec 400mg I had major problems with nausea.  After considerable suffering I discovered that taking it a full hour after my largest meal of the day almost entirely eliminated the nausea.  Others have had the same success.

Good Luck,
Buzz

I had a collection of side effects on imatinib that disappeared immediately when I migrated to dasatinib. The feeling of coldness was a very real problem for me. When I went swimming into a correctly heated pool (28°C to 30°C) I felt intensely cold and purchased a jacket to wear while swimming. At my first swim without imatinib, the feeling of coldness disappeared.

 

Hi Sandra, at 3.5 months a lot of the imatinib side effects (bone pain, fatigue etc), drop off to an acceptable level for many patients.Some have to change to another TKI. Despite these not being available as generics yet, and therefore more expensive to NHS, protocols allow this for side effect issues. I think a discussion with your consultant would be a good thing. How are either your FISH results or BCR-ABL results?

I lived with imatinib at 400mg for 10 years before we knew it was possible reduce dose. When I went to 200mg most of the residual side effects disappeared. However dose reduction is not recommended until several years of MMR ; it sounds like your side effects need more urgent consideration.

 

Sandra,

I found the first six months after diagnosis to be quite challenging.The bone pain led to some sleepless nights but as one medic said to me the drug is doing its job and your bone marrow is changing and the leukaemic cells are reducing-so a positive is happening.Hopefully you are responding well to treatment and that the cytogenetics are going in the right direction.

Fatigue is a normal side effect of a tki like imatinib or as well it could be partly a result of the disease itself.I had lots of eye pains and eye bleeds as as time went on these reduced;it might be an idea when it is possible to have your eye pressures taken as the drug can lead to the optic nerve being affected.The mood swings and anxiety I found hard to deal with but these are listed in the side effects.Headaches might be related to how and when you take the pill as taking it without adequate water and food can contribute to nausea and headaches.

I suggest that if you are responding well then try to stick with it for a while and hopefully things will get better as the drug and the body get used to each other;perhaps if the chills become very concerning then that is the time to seek help.

The alternative tki s might seem attractive as a possibility but remember one in five who take dasatinib suffer pleural effusions and with nilotinib there is the need to fast before and after taking the medication and it can be tough on the heart.

After 14 years on imatinib I still get dreadful muscular issues and cramp at night but the drug has the right effect still so we have to carry on .All tkis will have some side effects and hopefully one hopes that the ones that affect you are not too severe.

With best wishes

John

Hi Sandra ,I had most of those side effects plus really bad diarrhoea ,hooded eyelids and a rash.I thought that was just how it was going to be on Imatinib.Some did subside over time .I was changed to Dasatinib after 12 months and all side effects disappeared within days thank goodness .I started on 50mg I refused to take 100 mg as suggested because I was scared it would be too toxic for me ,I am now steadily decreasing my dose to get to 20mg and touch wood I feel fine.Maybe Dasatinib could be better for you ,have a discussion with your doctor maybe .Good Luck, Denise.

Don't know how I missed this - sorry.  Yes, yes, yes, to all your feelings and symptoms.  I did, indeed, have them on imatinib.  All comments you've received are great.  What you have before you is simple:  either they go away with some time or you switch meds.  I gave imatinib two years and I probably should not have.  I was dangerously into depression territory. Complicating for me was that it was 2009 and my community hem-onc didn't acknowledge my troubles as side effects, so the whole thing took on an Alice Through the Looking Glass feel to it.  I was very confused, self-doubting, and so alone with my misery.  He had no patients on the new TKI, dasatinib.  I got a new onc (a CML expert), into therapy, and changed meds.  Anyway, I was one of the ones who really did super on dasatinib and those side effects became a thing of the past.  How are you doing now?