Old 01-05-2018, 06:26 PM #1 (permalink)
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Default Pimozide

Happy Friday everyone (and Saturday to some).

My PALS started on the phase 2 clinical trial of Pimozide on December 20th. The first week he had no side effects, but the last several days have been brutal. Excessive drooling, slurred speech and a shuffling walk. He sleeps constantly, too, and has come home from work early everyday this week.He seems to have aged 30 years in a week and a half.

He's going to try to hang on for a bit longer on the clinical trial or be forced to go on disability to get through the next 5 and a half months. He doesnt want to stop it, as the benefits shown in phase 1 have been quite remarkable.

He is on the lowest dosage (1mg), so he cannot reduce the meds further. Just thought I'd give an update on progress for anyone who has been aware of Pimozide.
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Old 01-05-2018, 06:36 PM #2 (permalink)
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Default Re: Pimozide

That drug has a long list of OTC and rx drugs and supplements that can interact, so I would double-check those. Also, it's known to be a heavy-duty drug, and not everyone should be on it, so please be honest in reporting these effects. It's not a case of "stop and all's good" or "nothing really bad can happen."

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Old 01-05-2018, 06:47 PM #3 (permalink)
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Default Re: Pimozide

This is one of the zombie medications they used to give schitzophrenics back in the seventies. I guess the decision is a longer life in a chemical straight jacket, or keep your wits about you.
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Old 01-05-2018, 06:57 PM #4 (permalink)
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Default Re: Pimozide

I asked my neuro about this trial and whether she thought I would be a potential candidate. She indicated the effects of Pimozide in ALS/MND is at the junction between the LMNs and the muscle. So anyone with UMN dominant MND would gain little benefit, if any. Her explanation of the effect is that it's a signal booster- kind of like turning up the volume of what is there, but not slowing down or stopping degeneration.

I hope your husband experiences a reduction in what appear to be some pretty terrible side effects very soon. I admire his determination to stick it out as long as he can. Thank you for this update and all my best to your husband.
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Old 01-05-2018, 07:02 PM #5 (permalink)
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Default Re: Pimozide

Good Lord, those are some scary replies, but necessary to be well informed. Thank you so much everyone.

My husband is LMN dominant so I guess that's why he made a good candidate.

Laurie: As per ethical guidelines in research, would the researchers have to be sure of any potential drug interactions before human trials could begin? I'm pretty green in research so I'm not sure of much when it comes to clinical trials.

I will definitely keep everyone informed throughout this process, however long it lasts.

Thank you again.

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Old 01-05-2018, 11:43 PM #6 (permalink)
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Default Re: Pimozide

Joanna,
It's part of the protocol to evaluate the pt for drug interactions, so he should have been asked what he's taking, etc. But some possible interactions are a judgement call as far as exclusion criteria go. If you tell us what he takes, we can see if anything's on the list and how high.

Besides interactions, though, it's an old, dirty drug and some people are going to respond badly even if no interactions exist.
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Old 01-06-2018, 05:42 AM #7 (permalink)
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Default Re: Pimozide

Hi Laurie,

My husband is taking Riluzole and Edaravone for script drugs, Tylenol occasionally, as well vitamin D and E drops.
I looked and there didn't seem to be any interactions with the Riluzole, which is good. Having said that, if my husband's side effects do not subside, its not worth it to continue.

As it is right now, he's not out living. He's barely able to work and he's in bed all the time. I dont see the trade off, but i'll leave that ball in his court to decide that.

I appreciate your help with this, Laurie. Have a good weekend.
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Old 01-06-2018, 07:38 PM #8 (permalink)
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Default Re: Pimozide

Quote:
Originally Posted by Bestfriendstilltheend View Post
Happy Friday everyone (and Saturday to some).

My PALS started on the phase 2 clinical trial of Pimozide on December 20th. The first week he had no side effects, but the last several days have been brutal. Excessive drooling, slurred speech and a shuffling walk. He sleeps constantly, too, and has come home from work early everyday this week.He seems to have aged 30 years in a week and a half.

He's going to try to hang on for a bit longer on the clinical trial or be forced to go on disability to get through the next 5 and a half months. He doesnt want to stop it, as the benefits shown in phase 1 have been quite remarkable.

He is on the lowest dosage (1mg), so he cannot reduce the meds further. Just thought I'd give an update on progress for anyone who has been aware of Pimozide.
I worked as a RN in Emergency Psychiatry for most of my career. Some people are extremely sensitive to anti-psychotic medications such as Pimozide. They experience extrapyramidal side effects such as shuffling, stiffness, drooling. His doctor should be called to discuss those side effects. There is a medication that is an anticholnergenic called Cogentin that can be given to take away those awful side effects. Pimozide is generally safe, but does have some heavy duty side effects. If the Cogentin isn't allowed on the clinical trial, he may be best to abandon the Pimozide. I am so sorry that he is having such difficulty. He has enough happening without the misery of side effects that have occurred. Many other people seem to have less sensitivity but he is one of the unlucky ones.
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Old 01-07-2018, 09:30 AM #9 (permalink)
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Default Re: Pimozide

Hi Laurel

Thank you for your reply. My husband has been off Pimozide for 36 hours now, and will go another 36 and see how he feels. If he's felling better, he will go back on Pimozide at 1 mg a day. He was initially on 2mg in the morning, and then after 8 days, 2mg in the morning and at night, and that's when things got bad. He then went back to 2 mg and things did not improve, so he'll stop for now.

I'll keep updating on this portion of the forum to let others interested in the trial as to how things are going.

Have a good rest of your weekend.

Joanna
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Old 01-07-2018, 11:50 AM #10 (permalink)
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Default Re: Pimozide

Joanna I hope he feels much better in another few hours. Perhaps when he gets back to square one, you can talk to the doctor about him staying on Pimozide 1 mg since he seemed to do okay on that. Those medications are pretty potent. That is why so many mentally ill people don't want to take them i.e. it clears their distorted thoughts, but makes them feel physically like zombies if the dosing is wrong or the particular drug is just not for them. It takes a good psychiatrist to find the right drug and dosage for most. Take care and I hope things improve soon.
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Old 01-07-2018, 10:00 PM #11 (permalink)
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Default Re: Pimozide

Thank you, Laurel 😁.

I'll update periodocally, as needed.

Joanna
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Old 01-08-2018, 12:58 PM #12 (permalink)
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Default Re: Pimozide

Is there any improvement now he has been off the meds for a few days?
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Old 01-08-2018, 05:51 PM #13 (permalink)
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Default Re: Pimozide

Hi there, Tillie.

Thank you so much for checking in.

There's a huge improvement in his energy. He made it through work today! Having said that, his slurring hasn't decreased at all and its been 3 full days off the meds. I'm hoping that perhaps that side effect may take longer to dissipate.

I haven't talked to him since this morning, so maybe over the day the slurring has decreased. Fingers crossed.

Thanks again. ��

Have a good day.
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Old 01-09-2018, 12:19 PM #14 (permalink)
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Default Re: Pimozide

A huge energy improvement is certainly important - ALS saps energy enough without have this is a side effect of a med as well.

Everything crossed for speech improvement xx
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