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Bestfriends14

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I'm currently running two threads but on two different topics. Hope that's ok.

My husband is on a clinical trial of Pimozide and shortly after starting, he exhibited very worrying side effects. One of those SEs is slurring his words. I'm beginning to worry that it's not just a side effect but the travelling of the disease. Now, his is lower left leg onset that has spread to his right leg, with very little symptoms to date, and right forearm with no symptoms to date.

My question is, it couldn't spread to the bulbar region with how his disease has progressed, could it? Not this quickly, I mean. I know it will eventually, but I thought it would go to arms first.

He doesn't choke on anything, he just talks like he's completely wasted. He's been told by others at work to go home because his slurring is so bad. He's unable to fully participate in meetings because of it.

Thoughts?

Thanks everyone.
 

Nikki J

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The side effects of pimozide can mimic bulbar. I think he needs to talk to his doctor and the study people ASAP.

To answer your question is it possible? I suppose so though usually leg onset people get arm first. I have seen though that once bulbar starts it can leapfrog in progression rate especially over the second area. My sister was arm, leg, bulbar but she could still walk with help when she was unable to speak or swallow. My aunt was leg arm bulbar but she had a little hand use to the end

I realize that you and he had great hopes for pimozide but does he really want to trade qol right now for a theoretical chance at living longer? This isn't like chemo for cancer where get through the treatment and hope to resume normal life after. I am really sorry.
 

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Well, I looked it up. Pimozide is an antipsychotic drug (I recall from a previous post that this is being studied in ALS). Speech abnormality is listed as a side effect in 10%, though it’s not clear to me what form the impediment takes. Slurred speech can also be an effect of ALS in the bulbar region.

So in a situation like this, I’d recommend a trial off the Pimozide. You might have to wean him off slowly depending how long he’s been on it. Probably best to check with the study people on this, also to let them know why. If the speech doesn’t clear off the Pimozide, you’ll know it’s the ALS, and then you can restart the drug, if that’s what you choose.
 

Bestfriends14

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Karen and Nikki,

Thank you so, so much for really helpful advice. My husband has his neurologists personal number and so I'll get him to contact him ASAP.

We'll try stopping the drug for a bit and see what happens. He's been on the drug for 17 days and I would think that the side effects would have decreased a bit, but they're not at all.

I'll keep all posted.

Thanks again.

J
 

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I'm sorry to hear this is happening, it must be scary! Firstly you can have as many threads open as you like, you are a full member and this forum is here for whatever kind of support you need :)

I totally agree with weaning off the Pimozide and seeing if the speech improves as that will give you your answer.

Unfortunately the only predictable thing about this disease is how unpredictable it is, so we can't quite say it would or would not take any particular order of progression.
 

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Note- Pimozide can apparently cause extrapyramidal issues (disordered involuntary movements). There are some ways to mitigate the side effects (another drug), but it sounds like your husband's response to the drug is just plain intolerable. I am glad you are contacting the neuro sooner rather than later.
 

Bestfriends14

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My husband just spoke to his neurologist who's encouraged my husband to stop taking the meds for 3 full days. He'll then go back on at the lowest dosage and see how that goes. If his symptoms come back, he'll discontinue the drug for good.

What a ride it's been. Good Lord!

Thank you again everyone.
 
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Bestfriends14

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Update:

The slurring has not gone away and it's now day 4 without the Pimozide. I didn't sleep at all last night due to worry. My husband's job is so speech based; he runs meetings, speaks at conferences etc. I just don't know what this will do to his esteem if he can no longer work.

Does he absolutely need an EMG to confirm bulbar? He still has scars on his leg from last May's EMG so I worry about healing. Or maybe he just has a physiology that holds on to side effects. He has all his energy back now that he is off the drug, but unfortunately, the speech issue still remains.

This has completely caught me off guard. I had created a nice, safe delusional world that it would remain in his leg for years and years before taking his speech.

I'm shell shocked.
 

Nikki J

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the half life of pimozide is fairly long- 55 hours and is apparently quite variable. Your husband might- might still be eliminating it.

Apparently the effects don’t always go away. This would be horrible but better than this being bulbar which would only progress.

Generally once ALS is diagnosed they follow clinically. Certainly my sister never had another EMG after the first diagnostic one. It is possible if this persists and there is doubt as to cause an EMG would be suggested. I am shocked he has scars from an EMG. I have had over 10 for research purposes and not a single mark from them. I have had a facial EMG and special small needles were used. For the standard bulbar screening locations they use regular needles but there are only a few locations to check with those.

I am terribly sorry. How frightening for both of you
 

Bestfriends14

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Thank you, Nikki.

I'm hoping that it's a slow subsiding of effects. However, we are going on nearly 4 days w/o drugs and that's nearly a hundred hours. Friday is the last time he took it.

As for his leg scars, by the time they did a proper EMG at the clinic, his leg had atrophied so badly that it was practically skin and bones. There was no circulation to promote healing in that leg. We had to use a concoction of several things to ward off infection, as a result.

I'm not ready for the whole bulbar thing just yet. Alhough, is anyone ever ready for what this disease brings?

We'll keep positive and hope the slurring goes away. My husband will reach out to his Neuro today to ask him about this.

Thank you again.
 

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It may also be worth asking his neuro about Nuedexta. I was prescribed Nuedexta for PBA (uncontrollable inappropriate laughter/crying). However I noticed a big improvement in my voice and speech after starting it, which it turns out is a commonly reported benefit by ALS patients. At the time I had a thick nasal voice (despite no congestion) and mild slurring. My voice and speech went back to almost normal-- normal enough that most people could not perceive anything more than a slight nasal quality to my speech. It took about 6 months for my speech and voice to slowly devolve back to where my starting point had been. Ironically, I've found Nuedexta improves my bulbar symptoms better than it improves my PBA!
 

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Sometimes the effects of a drug can last much longer than it’s half-life. If the speech changes are due to the drug, it may take at least a week to see improvement.

My heart goes out to you BFTTE. Your husband’s disease course has been very much like mine with foot drops as the presenting issues. So I’m thinking of you guys and have my fingers crossed that the bulbar symptoms improve. If not, I think Kristina makes some good points.
 

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Crossing my fingers for you that there is improvement still.

My husband was bulbar onset, so I know how cruel that is, and as a cafe owner, talking and food/drinks was his whole life and that was the first thing taken.

It is scary, but we are behind you xx
 

Bestfriends14

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Thank you again, everyone. The doc says it may take a few more days for the slrring to go away. I guess it's a wait and see until then.

Thanks again for all your help. It's a huge relief to have such a nice support system.

Xo

Joanna
 

Bestfriends14

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Hello,

I thought I would close the loop on my husband's symptoms now that he has been off medication for 6 days. His slurring has pretty much dissipated, however, if he is sleepy in the evening, you can hear a slight slurring of his words. I believe this should all go away within the next couple of days.

Thank you again for everyone's support.

Have a good rest of the week.

J
 
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