Tasigna Nilotilib - does it really slow down PSP? Is it worth the investment?

[Aslin]

Hi,

I just seen a post below that was made by Andyniem 2 years ago referring to Tasigna Nilotilib potentially slow down PSP:

My wife has PSP and there may not be a cure for PSP, but there is a drug that slows the progression

andyniem #andyniem

Does anyone have an update on this drug? Does it really work with PSP? Is it worth the investment?

Thanks for sharing your experience in advance.

Wishing you all well 🙏

[HelloStarr]

I don't know but we tried it and nothing happened. My mother was too far along. Additionally, I didn't realize this but Tasigna interacts with many medications. A lot of medications will render it useless--so my mother didn't even get any Tasigna even if she ate it. She was taking meds that mess it up. One pharmacist told us she should take it alone in the morning with just a half of cup of grapefruit juice (which increases the strength of certain meds). Make sure to do the research on this...

[Aslin in reply to HelloStarr]

Hi,

Thanks very much for your response. My dad is also far along the journey. He is now on peg-j and getting occasional pneumonia. Only continuous medicine he is taking is nac and motilium.

Its a bit of an investment so i want to make sure that its worth it.

I am devastated that i just found out about this medicine despite of paying attention to anything and everything about psp 😞

Thank you 🙏

[daddyt]

First time reading about this. I would think if Tasigna was effective in slowing down PSP's progression, more of us would be using it. I can't any clinical trials where it has been used in PSP patients - leukemia... yes.

Tim

[Adamxd in reply to daddyt]

Hi Guys,

According to this post : healthunlocked.com/ataxia-u...

Someone used it for SCA (neurodegenerative disease) , but not for PSP, and the current clinical trial is assessing it on SCA candidates..

[Aslin in reply to Adamxd]

Thanks Adam.

I read a few posts about some PSP patients benefiting from it also but surely not enough trials..,

I am still trying to judge whether its worth trying... whats the worst could happen I dont know..

[Aslin in reply to daddyt]

Hi Tim, thanks for your response. It kind of made me relieved that I didn’t miss something really obvious that could have helped dad but at the same time it left me with no hope, in where i was before. I was hoping that this could give us at least a few more years back..

[daddyt in reply to Aslin]

Hope is a good place to start. Take some comfort in knowing research is ongoing, I want to believe they're on the cusp of a breakthrough.

Tim

[Aslin in reply to daddyt]

Thank you Tim! Fingers crossed 🤞 praying for it with all my heart 🙏🙏🙏🙏

[Mamalou59]

Hi. We are from the Philippines. PSP much more unknown here but amazingly, our neurologist here diagnosed him 3 months after initial consultation. we were then advised to try the clinical trial on monoclonal antibody in the US.

My husband tried tasigna as our research nurse in Mayo clinic told us that some patients have tried it and had good results. We were at towards ending the clinical trial at that time and desperate for anything ( we stayed in the US and came back and forth for a year for the trial and still noticed progression so we decided to stay home for good last May 2019 as it was getting more difficult for him to travel. He was diagnosed in 2016., by the way.

He took tasigna for 3-4 months but decided to discontinue. He said he didn’t like the way he felt when he took the drug. He felt nauseated most of the time. and symptoms still progressed.

He is now on a PEG tube since April. he has episodes of coughing esp at night which cause sleepless nights. we are just praying for a miracle.

[Aslin in reply to Mamalou59]

Thank you very much for your response. Its great hear from someone who actually tried although I am sorry hear that it wasn’t useful for your husband.

We all praying for a miracle which we hope comes soon.

Praying for your husband..

[Mamalou59]

Thank you for your prayers.

It ‘s all we can hold on to.