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Low dose Nilotonib

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Hello to all

are any of you currently on low dose Nilotonib, once daily 150 or 200mg and is it keeping mmr stable? 

I have tried to find research papers where they have tested the lowest dose required to maintain efficacy of treatment but only found documents related to Imatininb.  Does anyone know of any data sources that may be available that may help?

thank you 

Hello, currently explore this on 150 mg, i started 6 months ago from 0,0054, after 3 months 0,0057, prezent 0,0091, now i started to take the pill with food.

Thanks for the reply 

id forgotten about low dose with food as a viable alternative and could be useful!  That is something I will look for in the online documents. 
 

 

 

Hello Mick and everybody
I'm very interested to get to know about dose reduction of Tasigna nilotinib.

I actually did it myself since got the results of 0.003 ofBCR. And next test showed 0.001.

I did it out if desperation because the side effects of 300mg 2 times a day made me very sick and I couldn't manage to work as before.

First time I hear about Tasigna with food - does it make the effect of this TKI stronger?
Thanks
Tanya

Hello Tanya

sorry to hear you’ve been having problems!  
when I initially started on Tasigna it was 300mg twice daily but due to acute pancreatitis problems refused to take it twice daily.  I’ve still be having problems taking 300mg once daily!  I’ve found out that Tasigna can cause insulin resistance due to its affect on adiponectin.  Beginning to feel like I’m talking to a brick wall as although the research  documents prove it, no one appears concerned about the long term effects on metabolic health.  I’m currently doing Intermittent fasting and prolonged fasting to try and help minimise the problem and I’m hoping taking an even lower dose will help and at the same time still maintain the efficacy of controlling the CML.

Regards 

Mick 

 

And i reduced the doze without doctor to know, due to sidde effects, from 300 mg twice a day, to 150 mg twice a day, and hooped to maintain MMR, and surprice, i beggin to have a stable MR4.  After couple of months i didn't feel well with this low dose, as if the drog it accumulates.

Now with 150 mg once a day i feel the drog in my body, butt with low sidde efects, manageble.

They say if you take tasigna with food it doubles the concentration, butt i do not thing soo, i feel pretty god, next testing in two months.

Hi Mick
Appreciate your answer and I go Google more about effects you've mentioned. My doctor is a great practitioner hélas doing everything by protocol and honestly telling me that laboratories are not happy with "dosages experiment s".

We shouldn't not forget that here in France all doctors are taking subsidies for their education - normally paid by pharmaceutical companies.

About me - thanks to kind and sharing people around me and this group I hope I have found my way around side effects of Tasigna.

To get from 49% BCR to
0.003 %. in 3 months it's not bad I guess.

And since you have mentioned intermittent fasting I swear I did not eat much first 5 weeks of treatment - by instinct? Barely one meal per day and mostly fat and eggs. But my doctor is amazed how quickly I have got very decent blood formula back.

Regards and thanks again
Tanya

Hi VioS
Thank you for your answer. I'm glad I'm not the only one who decided to manage the treatment according to situation.

With 300mg per day 1 time I got my hair and nails growing back and most importantly I can work and drive for hours like before. I believe it's all very individual.

Another thing is: my doctor never did any exems like échographie or other tests but blood tests- so I have to listen to my body. It feels more comfortable now than with 600mg per day. I was having suicidal thoughts. It's true.

Please keep posting about your experience.
Courage
Tanya

Let me know how you get on with the results on 150mg once daily!  🤞

Tanya agree with the head issues!  There is definitely a direct link to mental health issues directly or indirectly in the way that Tasigna affects your metabolic system! 

Thank you for the answer and for sharing, do you know if you are allowed to drink ( mostly wine ) while on TAsigna? im not a drinker per se, but I occasionally enjoy glass of wine or two. and is eating more than usual interact with the drug? I fast daily from 7 pm to 2 pm next day, and I take my second dosage 2-3 hrs after dinner, I also box and my training some times exhaust me, I wonder if altogether cause resistance. Thank you in a advance!