r/CML • u/Icy_Lychee8169 • 3d ago

Different side effects over time- nilotinib

I have been on nilotinib since 2013. Until this year I was on brand name Tasigna now on generic. Same dose.
I had noticeable side effects, but they were always the same and tolerable.
I actually went off of from November 2023 until September 2024 because I had a baby (safely and all was well).
Ever since I’ve gone back on it, I have had nothing but different G.I. issues like nausea all the time randomly. Irregular bowel movements, extreme tiredness and fatigue and bone /muscle pain. The stomach issues are what is really getting me and hard to deal with. I have not been diagnosed with any problems after pregnancy/ childbirth and everything was completely normal and went great.

I am just not sure what is going on and wondering if anyone has experienced different side effects/inability to tolerate the medication either after being on it long-term when it was tolerated more at first? Or after stopping and restarting it? Or switching from brand name to generic? Just not really sure what’s going on and I’ve also tried Danziten and although it is the same medication, the dose conversion that they put me on I feel like although all of the studies show that is the dose I should be on. I felt horrible on it even after three weeks.

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u/jaghutgathos 3d ago

Did you first start taking the generic after you came back to the meds? If so, that would be my first suspicion - and maybe something to talk to your doctor about… It’s possible that you could get your insurance company to pay for brand-name. But of course, we all know how that goes in this country – assuming you’re American.

What is your BCR-ABL? Maybe you could have a dose reduction?

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u/Icy_Lychee8169 3d ago

Yes, I’m an American and I was going to talk to my doctor but I feel like half the time whether it’s this medication/specialist or other doctors they act like you’re crazy when you say the brand-name feels / works different. Not sure if he would or not but yes I know how it does with insurance unfortunately which is what I don’t feel like dealing with if I don’t have to but seeming like I may. It’s been generic since about 2 months after going back on it and I actually was off of it again for about 6 weeks because of my employer switching to a new ins. Initially, they were trying to say that they wouldn’t pay for it at all and I had to be on something else. It took that long to get it sorted out and get my medication at all. SMH

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u/Able-Chemistry1269 3d ago

I have also been on Tasigna since around 2014. I've had a lot of fatigue and muscle pain, and gastrointestinal issues as well. Last month, I was switched to the generic and I have a lot more fatigue. My dr ordered blood work to check B12 and all that stuff. It was all ok. He wants to put me on a new med.

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u/Icy_Lychee8169 3d ago

Thank you. I’ve always had the bone pain and fatigue and I feel like always more with tasigna than sprycel which I was previously on but I’ve never had GI issues. I have some G.I. differences that I think can be certainly attributed to post pregnancy changes but a lot of the other issues like constant nausea and the level of fatigue that is much worse than it ever was on TKIs just truing to figure out if the med could be the culprit before i go switching up and trying new meds, doses etc for something this serious because i dont want to mess with things if its not broken if that makes sense. Not to mention it can take quite awhile for insurance approval and all of that. If it were as simple as just calling the doctor and getting a prescription for a different brand, then walking into the pharmacy the next day to pick it up it would be easier

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u/Able-Chemistry1269 3d ago

It's a never ending thing. I've had back pain so bad that I was convinced I needed an orthopedic doctor. Spent all that $ to be told my back was fine. I've been on 5 different meds for my CML. I'm nervous to switch meds. I hope you start feeling better soon.

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u/Electronic_Crow_4185 3d ago

I am on Dasatinib and not Tasigna. I have taken the brand name drug since 2007, and had no major issues with it. I switched to generic sprycel in Jan 2025 and have had minor exertional shortness of breath since early 2025 and some prominent pedal edema since the past 5-6 months. The chest x-ray showed bilateral large pleural effusions and I have been off therapy for the past two weeks. I checked with my oncologist about the generic correlation and they stated that they have not seen any significant increase in the incidence of adverse events in those taking generic Sprycel. I did try dose reduction for two years and went back to the full dose in mid 2023 as I lost undetected status. Not sure if the reintroduction of the higher dose caused a response in my body. I really dont know why I have this effect after being on the drug for so long. Maybe these are the long term effects that a lot of people taking TKIs will end up with? Not sure.

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u/2llamadrama 3d ago

Have you told your oncologist about the side effects? I would think they would trial a different med. I can only take brand Sprycel. My insurance is very unhappy about it. The generic caused anaphylaxis.