Withdrawal of Amantadine in PSP


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Withdrawal of Amantadine in PSP

Postby TAXED » Sat Jul 12, 2014 12:50 pm

We are one of the people who decided on Amantadine although controversial for PSP, members in our PSP group benefited so we decided to give it a try. There were positive effects, that was two years ago, and I'm suspicious today there might be no benefit, just side effects?

At this stage we are now trying to get off everything we can to keep mental function as high as possible. This was after exhausting, through years of experimentation, every drug we could find, and then winding it down to just a few drugs that seemed to have a positive imapct. For the most part we have learned there are a lot of drugs out there that have had no positive effect. At present my wife's meds are:

MORNING.................NOON.............DINNER..................BEDTIME...................TOTAL ALL MEDS
========.................======............=======..................=========..................=============
Ritalin 5mg.............Ritalin 5mg.......Amantadine 100mg....Ativan .5mg...............Ativan 1mg
Amantadine 100mg........................Ativan .5mg...........................................Amantadine 200mg
..........................................................................................................Ritalin 10mg

We are one week into just 100mg of Amantadine, and she seems worse in confusion, balance and depression; but, we also had doctors appointments a week before and we are thinking the decline is from the stress of these appointments (which has happened before) and not the Amantadine. So we've decided to eliminate the other 100mg Amantadine and see what happens. If she digresses we might never be able to stop this drug, so we'll go back to the 200mg, but if she seems the same we will drop this drug and all it's side effects (there is a very long list of side effects) for good.

Does anyone out there have any experiences to share, opinions, thoughts, anything? Are there others that have benefited from this drug, or not?.
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Re: Withdrawal of Amantadine in PSP

Postby Robin » Sun Jul 13, 2014 3:57 pm

I'm not sure many of us here have experience with amantadine. But I noticed that the spouse of "DreamRN" is taking amantadine, and "DreamRN" is also worried about weaning him off the medication. Maybe you two should talk??!
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Re: Withdrawal of Amantadine in PSP

Postby TAXED » Sun Jul 13, 2014 6:23 pm

Thank you Robin I will do so!
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Re: Withdrawal of Amantadine in PSP

Postby zymurgy » Mon Jul 14, 2014 4:01 pm

For whatever it is worth, my husband takes 100mg of Amantadine three times a day. He is also taking carpidopa-levodopa 25-250 three times a day. We have noticed no difference with 25-250 vs the 25-100 he had been taking. I wonder how we will notice when its benefits (if any) start wearing off.
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Re: Withdrawal of Amantadine in PSP

Postby dreamrn » Mon Jul 14, 2014 4:27 pm

Please check my supplements post as I noted the regime we are using in regards to sinemet and amantadine along with the recently added supplements
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Re: Withdrawal of Amantadine in PSP

Postby JoB » Thu Jul 17, 2014 9:06 am

Would-be users of amantadine should be aware of some of its side-effects. For my wife, it provoked a high-fever and a trip to the hospital. Our neurologist then immediately stopped the drug, and she recovered almost immediately.

See, for example:

http://en.wikipedia.org/wiki/Amantadine#Adverse_effects

"Amantadine has been associated with several central nervous system (CNS) side effects, likely due to amantadine's dopaminergic and adrenergic activity, and to a lesser extent, its activity as an anticholinergic. CNS side effects include nervousness, anxiety, agitation, insomnia, difficulty in concentrating, and exacerbation of pre-existing seizure disorders and psychiatric symptoms in patients with schizophrenia or Parkinson's disease. The usefulness of amantadine as an anti-parkinsonian drug is somewhat limited by the need to screen patients for a history of seizures and psychiatric symptoms."

Courage, Joe Blanc
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Re: Withdrawal of Amantadine in PSP

Postby TAXED » Thu Jul 24, 2014 1:29 pm

Thanks for the responses everyone, I thought I should send an update.

- For the last two years we've been on 200mg Amantadine, we had improvements in gait, balance, and communication.
- Five weeks ago we went to 100mg Amantadine
- Four weeks ago we went to 0mg Amantadine
- We went without any for two additional weeks.
- This week we started back on 200mg a day.

We noticed the following in one week, but waited until she was off completely for two weeks (for potential withdrawal effects to wane) before making these observations:

- She went from being able to form a sentence, to one word, to almost completely non-responsive
- She went from difficult communication but being mostly lucid, to non-responsive and not understanding almost anything
- She went from being able to walk with assistance, to freezing when walking with assistance, to wheelchair
- Both her left hand and left foot toes went from slightly curved (or club foot), to being close to severely curved
- Eyes slightly closed when fatigued, to eyes always slightly closed, to completely closed when fatigued (or later in day)
- Needing encouragement to drink liquids and stay hydrated, to drinking very little (and that was a struggle) and severely constipated

After putting her back on 200mg per day, on day four, all the above have improved by 70% to 100% (her communication is 100% recovered), which is incredible. We really didn't expect this, and it is hard for me to believe this is a placebo type effect. We have concluded she has definite benefits from this drug, and now are wondering if next week we should increase her dose to 300mg.

When we are done experimenting with Amantadine, we are thinking about trying to getting her off of Ativan, and then adding a coconut oil supplement concoction.

Our goal is to get her off of any medication that doesn't have a seriously proven benefit (especially to lucidity) before we move into the next phase of PSP (wheelchair and bed bound), in hopes of diminishing any side effects that effect lucidity.
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Re: Withdrawal of Amantadine in PSP

Postby zeldadarln » Tue Aug 26, 2014 9:06 pm

Again, just like any drug, in any person, it is so individualistic. Period. Cannot compare to others in the group or on this board, as it is so individualistic.

My FIL was on many medications, for many serious health issues, not just PSP. After a series of setbacks for other medical issues, he started to hallucinate and make no sense. Bad. Real bad!!! Crazy stuff! MIL and I took him to the north coast PSP neuro, who immediately took him off the amantadine. Within 24 hours, was almost back to normal self. Ativan ... Is it a real requirement and real helpful? Probably not. Of what benefit, is it? Adds to the confusion and delirium, IMHO.

Another thing to consider about medications ... time of day/night taken. Many people do well at different times than what is "suggested" or "recommended," by pharmacist. It took us (physician and family) a full 6 months to tweak the recommended dosage, and, especially, time, for a medication, than what the pharmacist/label (manufacturer) instructed. Other things to consider as you stumble through this maize.

My 2 cents.
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