Amantadine

[Karynleitner]

In a Post by Satt2015, he attached a video. In it the doctor spoke of a patient getting results from Amantadine. The same patient tried Carbidopa-Levidopa unsuccessfully . Has anyone tried Amantadine?

Karyn

[johns65]

Karyn, Jim is only taking an anti depressive med. Never heard of this Amanytadine What does it do for the PSP patient? Sitting cold in Minnesota -Joyce

[Karynleitner in reply to johns65]

It is an anti viral medication that can be given to Parkinson patients alone or with dopamine replacement drugs. They believe it may restore some balance to neurotransmitters in the brain. Some patients say it makes a big difference with movement and rigidity for a year or two. However, it can have unpleasant side effects. Dan has seen 6 neurologists and no one ever suggested it. I guess there must be a reason they did not recommend it. We don’t meet with his neurologist for a few months, but I will mention it. He is getting hard for us to handle and any improvement would be a blessing.

Karyn

[Christine47 in reply to Karynleitner]

My husband (6th yr since dx) has taken amantadine with his carbidopa-levodopa for the entire time. When I asked his neurologist why she said it might help with stiffness. For whatever it is worth he remains limber. On the downside, yes, when his dose was increased inadvertently he had mild hallucinations. Those are the only medications he has ever taken for PSP.

[aliciamq in reply to Christine47]

My husband has no rigidity. He has been on just c/levadopa and amantadine for a few years. Recently , new neuro decided to drop it - dropped it from 3 a day to zero over a weeks time and the results were not good. He was hanging his head low and not engaging in 'conversation' at all - we waited a few days then went back on it and now he is taking just 2 a day - thankfully he regained what had gone - a subtle 'brightness' - as one of you described it. I looked it up on Wiki - interesting. The first neuro said they don't know why it works. It's given to to help with the side effects of the levodopa. If you do take it, you can't discontinue abruptly!!!! That's all I know..... P.S. Anything and everything I say can be wrong!!!!!!!!!!!!!!!!!!!!!

[Karynleitner in reply to Karynleitner]

Thanks. I thought it might help with his extreme rigidity . Thanks

[Christine47 in reply to Karynleitner]

It's why they call it a medical "practice." I also think some doctors just follow the "standard medical practice protocol."

[raincitygirl]

Our neurologist wouldn't recommend any drugs - said none were demonstrated effective enough; however, my hubby doesn't yet have the severe spasming that might be worth a try for such drugs... Sorry ..

[easterncedar]

Our neurologist had my guy try everything, including Amantadine, just in case he might have been one of the patients who are helped. He wasn't. Dr. Apetauerova has specialized in PSP for a long time, and I appreciated her advice and her giving us occasional hope. Nothing worked, but nothing hurt, either.

[Yvonneandgeorge in reply to easterncedar]

We were giving no medication at all for George’s psp through our long journey xxxxx

[Karynleitner in reply to easterncedar]

Thanks. I’m wondering why it was never offered to us. He has declined so rapidly and moving him is getting so difficult , as is dressing , washing etc, . It is getting grueling . Hopefully hospital bed will come next week and things will be a little easier. Thanks for taking the time to reply.

Karyn

[easterncedar in reply to Karynleitner]

Everything we were given required careful monitoring initially for bad side effects, especially hallucinations. We were told benefits, if any, wouldn't appear for several weeks while harm would show right away. PSP generally does not respond to Parkinson's meds, and the noted lack of effect is one of the points at which PSP is commonly suspected. We were willing to experiment because my Henry desperately wanted something to manage what he referred to as his wobbliness, which made his life so hard.

I imagine your doctor is weighing the small hope of benefit against no hope, false hope and the potential of harm.

[Nanny857]

Hi Karen, the neurologist prescribed Amandatine for my husband to help with extreme tiredness. He was on it for 3 years and it did help but due to hubby being diagnosed with an irregular heart beat he had to come off it as it wasn't compatible with his heart medication. Now the extreme tiredness is back. Hope this helps. Nanny857

[Evertonian]

When my wife was diagnosed with Parkinsons she tried Amantadine alongside Sinemet, it didn't work for her she's only recently diagnosed with PSP and still on Sinemet that seems to work. I suppose different meds work for different people we're just getting over the shock of the new diagnosis

Billy

[Kathryn]

My husband was prescribed amantadine by the neurologist quite late on , it worked well for him : his speech improved so much that he was able to speak to his brother and sister on the phone ,which he had not done for some time. Others of my acquaintance had similar good results . However for my husband it was short lived , he got a UTI and the effects of this were far worse than usual, exacerbated by the amantadine . We stopped the amantadine ,on the advice of the Parkinson's nurse, and decided not to try again. I should say that the other people I know who tried it did not have the same adverse reaction

[Caretaker101 in reply to Kathryn]

Hi dear ones

I have been reading thru the names of meds that the neurologist has prescribed to you all. My husband has PSP since 3-4 years or may be more before diagnosis. He has been taking all the medicines including amantidine, cardidopa levodopa, ropinirole.Just last month the neurologist addded Adcapone since he was slowing down. I am seeing a significant change for the better. His speech is clearer, he is more balanced and rigidity is less. He himself said I am feeling good.I am in India so you need to check out the generic name of the drug.

[aliciamq in reply to Caretaker101]

We've tryed Ritalin( didn't keep a log and never refilled) and the GP lowered his blood pressure med dosage saying that the lower dose could give him a little more pep and prevent a fall or two. I cringed at the more pep idea😆

[GmaDeb]

Hi Karyn. I’m new on here but had to reply to your question. First a little background on me... I was diagnosed with essential tremor of my right arm and head in 2012. My neurologist thought I was faking my difficulty walking! In 2016 I saw a new neurologist who immediately diagnosed CBD after a thorough exam. He was furious with my first neurologist! Made me happy to know I wasn’t crazy!! He sent me to the University of Iowa Movement Disorder Clinics (Iowa,USA). They agreed I had a Parkinsonism disorder. My tremor was causing migraines, so they put me on amantidine twice a day. My tremors literally disappeared. It’s been a life saver for me! My essential tremor is just becoming noticeable again so I get it three times a day now. I was seen by an interim neurologist (my last one moved to the east coast) in October and, after a 3 hour neuro-psych test with a specialist and thorough exam by this neurologist, he discovered a new symptom with my eyes. This has led to a changed diagnosis of cerebral PSP. I don’t know how much the amantidine has helped with my speech and walking, but it has most certainly helped with my tremors. Sinemet and carbadopa/levodopa didn’t have any effect on me. Like any medication, there is always the possibility of side effects. I’m happy amantidine has worked well for me without any adverse effects.

[Karynleitner in reply to GmaDeb]

Thanks. I had heard a similar story about the success of this drug. That is what prompted me to ask the group. I appreciate your help .

Karyn

[aliciamq]

Yes !!!!

[hubetsy]

Just reading your question about Amantadine.

Early early on my husband took Amantadine. He started stealing salami from the salad bar at the local (walkable) grocery. After confronting him about this (and discovering greasy stains in all the pockets of his pants), he justified it as it was only a little. Once we finished laughing about this, I looked into some side effects and discovered that loss of inhibition was a side effect for a tiny percentage of people. Needless to say, he stopped.

For years now he has had no PD meds for his PSP. Until last week. I got the wild idea that maybe Carbadopa/Levadopa might help with the severe rigidity. It did! And, he also spoke more easily and 1.5 hours to eat breakfast went back down to 25 minutes. I'm counting my blessings and doing the happy dance.

After reading more about Amantadine, I wonder if we should try it again for the additional benefit. We no longer have to worry about him walking to the store and stealing salami. He is not ambulatory.

Thank you for your post.

[Karynleitner]

Thanks. The carbidopa/ levodopa also helps Dan in a small dose. I have started and stopped it several times. I notice that without it , his neck becomes very rigid in a day or two. He does often take quite a white to eat. I give him all foods he can pick up. Sometimes he sits for several minutes with food by his mouth without biting.

Can you tell me the dose you give and how often?

Dan seems to reply simply to one or two questions when his nurse comes, but lately he does not answer me. Last night I offered him a choice to two treats ...asking do you want a fruit bar..no reply. Do you want an ice cream cone.... blank stare. I brought both and he just looked at them. I had to choose one and put it in his hand.

We are planning on seeing a neuro-psychiatrist next month. He does have some frontal lobe involvement and did have a few instances of problems with inhibition in the beginning .

Thanks again. Have a great day

Karyn