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Concerned about Side effects of Ponatinib 30mg

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Almost broke down in doctor’s telling me about the side effects of Ponatinib. It’s T315I mutation and doctor just prescribed me Ponatinib 35mg . I already have hypertension.

1. Blood clot ?
2. Strokes?

He told that he will start with 35mg and later possibly to 15 mg.

Drug is not available here in India. Doctor will import the medicine from UK. And it’s beyond my capacity to purchase and survive on the drug.

1.What should I do now?
2.Is someone taking Ponatinib 35mg? How are you managing?
3. Does anyone have access to low cost Ponatinib?

Please I am hopeless.

Hi,

I understand why this feels super scary, but maybe I can offer you some hope.

The really nasty side effects of ponatinib are heart related, but they are most strongly correlated to the 45mg dose. The manufacturers basically got the dosing wrong through their clinical trials, and through many years of real-world (i.e. in clinic, not in trials) it's been seen that 15mg is enough for most people and is VASTLY safer and has lower side effects.

The usual protocol these days is as your doctor is doing ... start with a moderately high dose, and reduce down to 15mg as soon as possible. People tend to do really well on this dose.

David.

David’s insightful post sounds very reassuring to me.
Suvan, switching TKIs is never easy but you look like a young guy from your pic and that will work in your favor.
Perhaps a way to assuage the tension you are feeling would be to focus on preparing for the change by eating right, getting enough rest, exercise, etc.
You want your body to be ready to handle the transition.
I’m sure a year from now you will be in a much better place with your system having had time to adjust to the change.

JP

Hello,
I was diagnosed with CML in early 2022. I have been on Ponatinib since January this year. Started on 15mg. Then increased to 30mg In February. Since May I have been on 30/45 mg on alternate days. I presently have blood tests once a week. This is the only tki I have been on that has not been a problem on my blood levels. I have no side affects at all.
I think at some stage they will lower my medication back to 15mg.
I have a ASXL 1 mutation. And a new mutation called RUNX1 in November 2024.
My BCR ABL was ‘0’ in May this year.
That is my experience with Ponatinib. I hope that helps.
I am 73, so not that young ! The side effects listed with all these medications can be horrifically long, but often people don’t get any, or very few of them.
All the best
Paul

Hello David you have always been my help at every stage of my disease. Relieved to know about the dose related complications. Doc is starting with 3mg/day and will reduce the dose to 15mg as you told.

I am healthy otherwise, only bothered about the hypertension for which I have been on Telmisartan 20mg for about 15 years.

Hope doc will take care of that too.

Thanks again!