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Hi Bestfriendstilltheend,

As I could see in the article regatding the survey, the patients reported generalized weakness, so I believe this should be expected as side effect.

Actually the doctor did not prescribe pimozide as this is still not approved for this treatment. However, we could obtain this medicine in another way. Doctor's opinion is that we took the right decision, since we have no other option so far. You have also inspired us by informing that your husband's disease is not having any progress. We know that there are risks and everything is still in a very early stage, but I really believe this medicine will stop the progression.

I will talk to the doctor about contacting the Trial center to get some more orientation.

We are also in contact with some people in Brazil that got some improvement in a short term by taking a medicine called Tamoxifen. We will talk to the neurologist and maybe also go for this medicine.
Let's keep in touch.
I wish you and your husband all the best,

Thanks,

Bruno Morato
 
Hi Ted,

I appreciate your support, but we don't have plans to go for ederavone since it is quite expensive.
First we will ckeck if the medicines that my father is taking are really effective. If we notice that the disease is still progressing, we may opt to add ederavone to the cocktail. If this happens, your help would be really nice.

Thank you so much,


Bruno Morato
 
Hi Bruno,

Just a quick check in to see how your dad is doing on the 2mg and how he's doing overall. As for my husband, the side effects are still there. I'm not willing to think the Pimozide has significantly slowed my husband's symptoms on it's own but more the combination of everything. Having said that, it's not unheard of for PALS to plateau, either, so we are taking his slowing of progression due to a plateau for now. If he marks a year without further progression, which I'm not confident he will, then I will get much more optimistic about the drug combination. Not to be a Debbie Downer, I just know how easily I can fall into delusion and denial. It scares me too much to think much further past today.

I truly hope your dad is feeling well on the meds and overall. Please update when you can.

J
 
Hi Bestfriendstilltheend,

I believe it makes sense that the combination of medicines might be the answer. The fact that your husband is not progressing for 6 months should bring us a lot of hope. My father is also having a combination of Riluzole and Pimozide. We will soon try to add Tamoxifen to this cocktail and also start a therapy with O3 (ozone). We are trying everything we can.
The current status is that my father still feels tired (maybe a known side effect from pimozide), however he had a lot of improvement on his breathing in the last 2 days. His Bipap pressure had also to be minimized due to such improvement. Next week we will go to the neurologist and ask him to get and share some information with the Canadian doctors that are participating on the trials. Maybe he can get further information regarding the side effects and possible actions to compensate the weakness.
Let's keep in touch.

Kindest regards,

Bruno
 
Hi Bruno,

I've posted a message on your personal page just so we're not having dialogue between just the two of us on the forum.

Chat soon!
 
Hi Bestfriendstilltheend

do you know other peoples' situations in the trial ?

what is the duration of trial ? how many weeks ?

are there any publications about it on the web ?

thanks
 
I know the Pimozide trial is just getting started in eastern Canada, for us in Nova Scotia, we will have to travel to New Brunswick to participate, according to our ALS Society office info, the study will be where half the participants will get a placebo, the other half of participants will be getting a varied dosage of Pimozide for the clinical trial. As we understand it, the patient participant will not have any idea if they are getting actual drug or placebo during the study phase.
 
mbg1977,

I was not involved in the study and bestfriendstilltheend would know better than me. I believe the study is almost finished and they will move on to crunching the data. The link to the study is here but the end date seems wonky Pimozide Trial

My neurologist in Vancouver worked with the group in Calgary and knows them well. She says the trial data will be evaluated soon and if the results are positive they will release the preliminary findings quickly. Any positive trial has pressure to disclose quickly, I guess because they want people to start getting the benefits quickly and the university wants the rise in status quickly also!

My wild guess is late summer but not based on any concrete knowledge - just a hunch.

Are you experiencing muscle wasting and weakness? It appears Pimozide (ORAP) will have the greatest effect on those symptoms as it designed to keep the muscles and neuron to muscle connections stronger for longer. If you have primarily spasticity it is hard to say how much help it will be. I think we will learn that in the trial results.
 
ScotiaSpirit,

Is that a long drive for you? Sounds grueling to drive all the way there and back several times.
 
Hi Mbg1977,

My husband's trial ends on May 20th. His entire trial ran from Dec 20-May 20 th. I'm not sure how others are feeling on the Pimozide, but his neuro did say that other's side effects were not as bad and eventually went away around three weeks after starting the Pimozide.

My husband has finally decided to give up taking the drug. He tried every which way to adjust to it and he could not; it was way too strong for him. He would sleep all day, and when he was awake he'd make strange faces and show little care in everything he did. He didn't laugh, he didn't get upset; he showed zero emotions. I didn't like him at all on it and he didn't like himself on it. He actually started feeling close to a dangerous level of depression. He had no quality of life. We both believe suicidal thoughts may have been the next side effects. That's how low he got.

Schizophrenia is an over production of dopamine (in its simplistic explanation), and if Pimozide aids in blocking or tapering back that over production, what is it doing to those who have a normal level of dopamine production? I'm not sure if that is too simplistic of thought process, however. We tried to get my husband on just 1 mg but his doctor said no, unfortunately.

As for publications of trial results, I agree with Ted and feel towards the end of summer. Just my hunch, as well.

Please feel free to ask any and all questions.

J
 
Tedstehr

you wrote "Are you experiencing muscle wasting and weakness? It appears Pimozide (ORAP) will have the greatest effect on those symptoms as it designed to keep the muscles and neuron to muscle connections stronger for longer. "

what benefits may be expected after starting the drug ? reduction of weakness and wasting ?

thanks
 
Mbg1977,

Please understand I have no medical training and most of my knowledge is from this site, other research and a few minutes speaking with my neurologist. Not the most reliable source!

I believe the drug will be shown to dramatically slow and perhaps at least temporarily stop the muscle wasting and weakness. It would be unrealistic to hope there would be any reversals. But I just read someone complain that the mental affect can be quite debilitating. Think of a psychotic person and the cacophony of thoughts bouncing around in their head. And this drug slows everything down. Now think of you or me with a pretty calm mental state. Now the drug tamps everything down and you feel in a permanent fog. May be too high a price to pay?
 
Tedstehr
are you using the drug ? what have you experienced so far ?
 
mbg1977,

No, I am not. I am basing this mainly on what BestFriendsTillTheEnd told me about her husband felt and an account I read somewhere else. Also, I tried THC for spasticity and CBD oil as a neuroprotective but I was too foggy most of the time and decided to stop it for that reason. There is another drug being tested that does the same thing as Pimozide I think called Tirasemtiv. It is being tested in multiple universities and it was designed by Cytokinetics. I don't believe it has those side effects.

I have been infusing Edaravone, the generic version of Radicava. I am thinking I have had about 13 cycles or so. Seems to be slowing things down but hard to say.
 
tirasemtiv failed to meet end points in a phase 3 trials and is no longer in development. In December a doctor reporting the trial results said there was going to be a trial of a similar compound that they believed would be better tolerated
 
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