Restarted Pimozide.

[Bestfriends14]

Mbg1977,

There are currently only 6 or 8 (I forget which it is), particpant's in the Pimozide clinical trial across Canada, 30% of which are on the placebo. My husband was not on the placebo. Since it has just been me posting through each phase of this clinical trial, as my husband was a part of the trial, I can help out with questions you may have about Pimozide.

My first post on the effects of Pimozide is here:

https://www.alsforums.com/forum/als-drug-trials/40450-pimozide.html

As well, I've given a fairly detailed experience of my husband's journey throughout this current thread of you your like to know how he is today. For my husband, it was not a good experience at all and got worse each time he went back on the drug.

J

 

[mbg1977]

Bestfriendstilltheend

so I understand you think it's not working ??

 

[Bestfriends14]

I'm not 100% sure, to be honest. He's had no progression since last September, but he's also on Edaravone and Riluzole. The doctor believes it's the combination of all drugs, not just the Pimozide, that's kept my husband from progressing.

The doctor believes that there will not be a one pill solution for ALS as it's a far too complicated disease, but he does feel that doing a multi-medicated approach could be the key to helping significantly slow down progression.

In any case, Pimozide stole any happiness my husband had. My husband has never been depressed a day in his life and he just kept getting worse and worse on the Pimozide. My husband was so depressed he confessed to me that he contemplated suicide. Giving up quality of life for quantity is not worth it to us. We want to enjoy the time we have together so my husband will never, ever touch Pimozide again.

 

[mbg1977]

here in this article

https://alsnewstoday.com/2017/11/21...izophrenia-therapy-orap-benefit-als-patients/

the researchers say

"A key finding was that within six weeks of the start of treatment, Orap preserved ALS patients’ thenar muscle function. "

how could they get to this conclusion in such a short period of time ? in such a comlex disease , i think reaching this conclusion should have taken more time. maybe more than 6 months . (think the slow progressors ?

 

[Bestfriends14]

What an odd conclusion after only 6 weeks. There's so much left out of that article pertaining to that particular human sample. If they could tell in 6 weeks that the thenar muscle was preserved, were these patients faster progressing? In slower progressing individuals, 6 weeks would not be enough time to make such an assessment.

I do hope that they find a similar drug that works on similar mechanics of the brain. Pimozide was just too brutal. Since my husband has stopped the drug, his right hand's fingers are seizing up and curling, he's tripping over his left foot (his bad foot) more and has also started tripping over his right foot, resulting in a twisted ankle.

Oh ALS, how you stuck big time.

 

[mbg1977]

Bestfriendstilltheend

what dose you were on?

 

[Bestfriends14]

Just one, 2mg tablet n the evening.

 

[mbg1977]

Bestfriendstilltheend

which side effects you have experienced?

 

[ShiftKicker]

Bestfriend's PALS is the person who was taking it. This thread, if you start reading at the beginning, outlines the side effects her husband experienced.

Her husband's first experience with the drug is also described here: https://www.alsforums.com/forum/als-drug-trials/40450-pimozide.html

 

[mbg1977]

i am sorry

my main concern is about stiffness it worsens at legs

 

[Bestfriends14]

Hi Mbg77,

My husband never experienced stiff legs.