Donepezil as an aid for PSP

[Richard33]

Hi all you good people,

A couple of weeks ago a fellow traveller here wrote about her husband with PSP that as his cognition and swallowing declined, his Doctor prescribed Donepezil. Originally, he was on 10 mg of Donepezil which improved his swallowing, alertness and cognition. Two years later when his symptoms of coughing when he drank fluids returned his doctor increased his Donepezil to 20 mg and by the next morning his eyes were opened widely and his swallowing was safe again. This amazed his speech pathologist.

I am always hopeful that there may be a drug to help even temporarily and wondered whether this Alzheimer's drug could help . I asked our Parkinson's nurse who asked a neurologist who said the short answer is no. He found an article with the below statement, that was looking at Donepezil and it’s use in PSP. Donepezil is a Cholinesterase inhibitor.

Cholinesterase inhibitors are not recommended if severe motor features are present, as any positive effects on memory may be negated by worsening of motor symptoms.

That said, everyone's journey is different and it may help someone where they still have good mobility. (Ruth's is now very poor).

One day, one day.....

Richard 🙂

[kafunzi123]

Thanks for information. The whole story is complicated. How reliable is the article. Our member reported positive results. It reminds me of the blind who wanted to understand how an elephant looks like but in the end each described it according to which part they had touched with the effect that they had different answers which were far from the truth!

[Millidog]

Richard, thank you for sharing this information. Like you I had read the posts about Donepezil and its benefits but on further search on this site could find no other posts on its use. I did further research ...trusty Google and could only find research and information stating not appropriate and detrimental affect on mobility and no positive research outcomes for PSP I am planning to ask our neurologist at next appt but he's very on the ball and I think would have mentioned it if he thought any benefit Best Wishes Millidog

[Bergenser]

I asked one of our neurologists and he said categorically "no", that it was likely to cause agitation (he may have said "severe agitation"). Since every PSP case is different it is worth asking, however it is clearly not generally recommended.

[maxandpoppy]

Yes but what's more important? My late husband's mobility was pretty much nil anyway. But I would have dearly loved to improve his swallowing and alertness and cognition

[kafunzi123 in reply to maxandpoppy]

It would be better if the answers were precise! Does Donepezil help against dysphagy at all? in which circumstances does it help or not help?

[Hidden]

A useful article though the study was completed on a very small number of patients.

pubmed.ncbi.nlm.nih.gov/115...

[Bergenser in reply to Hidden]

This is the same article I found when I first heard of Donepezil in this forum. It is difficult to read into it any conclusion about its effect on dysphagy in PSP (and nothing on the effect in CBD). I think this is the difficulty when researching such rare and complex conditions. I understand the need for hope and that anecdotal evidence is better than no hope. I'm not sure what research led to the concern about agitation from Donepezil. I hope you all continue to share individual experiences.

[pmcdonough1]

Thank you for reading my post. I am the wife who asked her husband's neurologist about Donepezil which he did prescribe. My husband was already on Bupropion when prescribed Donepezil first 10mg then two years later 20mg. My husband's first symptoms of PSP started in 2013. He passed in 2023 after sliding out of a hospital bed and suffering a head injury which resulted in needing a peg-tube. Before the hospital stay that resulted in his head injury he was eating minced and moist foods and drinking regular fluids through a straw and having Speech Therapy weekly. I witnessed no ill effects. If I had to go through this difficult journey with him or anyone else, I would insist on trying Donepezil, because I witnessed first hand his remarkable response. His neurologist thought he might have Alzheimers when he prescribed Donepezil originally, his doctors in the United States were fully aware he had PSP when they increased his dose to 20mg. Both times, the next morning my husband opened his eyes wide when waking and his swallowing and facial expressions were vastly improved. Best wishes to everyone.

[Richard33 in reply to pmcdonough1]

Hi,

Yes, thank you so much for telling us about your husband and I am so sorry he has passed. It was a lovely story that, however briefly, there was a drug that made a difference and improved his condition. My wife is in the later stages and it is so sad that I can barely communicate with her even though she is always trying to tell me something. This is a horrible journey, but stories, such as yours, allow a little glimmer of hope.

Richard 🙂