Just returned this week from our neurologist at University of Florida Neurological Clinic. He said to ease down until totally off Sintement (Carbadopa/Levadopa). Why, because we have been on it, off it, on it, off, it, on it, and don't detect any change. He is suggesting we try Amantadine which is to help with rigidity and motion he says. I've read the side effects which as most drugs are scarry. Just looking for someone who tried it and has comments about it. That's the beauty of this group, we can open up honestly about anything related to PSP. Thanks in advance for your response.
Jimbo
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My mom Irene went on Amantadine on the advice of Maggie Rose, the PSP nurse who helped with the founding of the PSPA. Maggie said it enhanced the effect of the Sinemet (dopamine) and also stopped the muscles seizing up. It comes in liquid form. Getting the prescription was easy as our GP knew nothing about PSP and would try anything Maggie advised. Getting the dosage right is crucial; as Jill says, too much and mom would claim to see another family in the house; a friend's mom saw lions + tigers in the room! Interestingly they weren't frightened by these hallucinations!! Mom's muscles never seized and she could walk - slowly but aided - till her last day. Being liquid we could put it in her PEG tube too. Worth a trial.
Jane, great information about the drug. I'll be keeping all those things in mind as we give it a try. If there isn't major improvement we won't stay on it.
Jimbo
Hi Jim
I'm a CBD sufferer so I don't really experience the falling over problems that PSP sufferers seem to but I was diagnosed about two years ago and the standard carbodopa/levadopa drugs did nothing on their own. Then my neurologist put me on Amantadine along with Stalevo about 18 months ago and I found I could walk again and actually get up from a chair without help, without it I would shuffle along when walking and could only just get up from a dining chair without help and would have no chance getting out of any easy chair or a bath. I've had no problems with hallucinations but I do have some horrific nightmares, the only way I can find to keep them to a minimum is to not take the Amantadine any later than 1 pm. My neurologist has warned me they may only work for 18 months to 2 years so my fingers are crossed at the moment.
Dave, thanks for the input. I think we'll give it a short trial but the results will have to be drastic improvement, like yours, or we'll stop. Not too keen on the nightmares my wife might have but the tip about not taking it late is good to know.
Jimbo
I cannot answer from experience because I do not prescribe to taking the usual medications listed for PSP. My neurologist also agrees, and does not offer any medications. It's obviously a personal decision but the side effects seem to outway the benefits with most of the drugs. A review (Cochrane) of Amantadine for Parkinsons showed insufficient evidence for its efficacy.
It seems that PSP sufferers in the USA are prescibed multiple drugs for PSP and many cause effects that the disease itself produces. When there are moderate improvements, they are often short lived. Sometimes PSP sufferers have milder symptoms in certain areas than others, and some put this down to their medications. However, this may not be so.
Of course, using external medications like eye drops (and botox) have a place in helping in PSP symptoms, along with analgesics for pain.
Then comes the problem of drug interaction when the PSP sufferer has other medical conditions and is on another raft of drugs for those conditions.
Perhaps you'll need to try it and see, so all the best in making your decision!
My husband had amantadine prescribed when he was first diagnosed with PSP, unfortunately he had major side effects mainly hallucinations and unlike a couple of other posts he was frightened to death he was convinced the house was haunted and he could hear voices talking to him in the roof, it upset me as well so the neurologist took him off the drug. I guess the drug affects everyone differently just as PSP. Best Wishes to you both
My husband was on amantadine for a while. He was fortunate in that he didn't seem to experience any side effects. However, it didn't seem to improve his PSP symptoms either, so his neurologist discontinued it.
My message to you is be very careful – and make an agreement in advance, on what side effects you are prepared to tolerate. Include it in writing and in your partner’s written health directives if possible.
My husband is one of the very fortunate people with PSP that has albeit temporarily found his wonder drugs! He has been on drugs in very large doses for close to two years. (Yes, it is starting to wear off quite quickly now). For him it has increased his mobility far beyond the expectations of the neurologist and psychiatrist he visits every month since taking his medication. However, the side effects (Which I can only suspect are due to medication & not PSP as there is no way conclusively determine unless John stopped taking the drugs, which he refuses) has been detrimental to my health and our young daughter. He was prepared to leave us (& did) rather than leave his drug regime. I liken my husband and prescribed drug use to someone being on ‘Speed’. John had very strong ethics and values which he shared with his wife (me) and cherished our young daughter. However, over such a short time of taking Madopar, Madopar Rapid & Amantadine he developed a “Must have and I will be damned on how I get it attitude’. (Which drug was the cause/catalyst we will never know). He was shop lifting, lying, giving our possessions and money away, inviting in odd people at odd hours, gambling with his life, felt those closest to him owed him a life, and had sexual urges beyond the family home. John ‘pharmacy and doctor shopped’ to get more than the prescribed dose to fill his cravings. He hid drugs so he could take extras into respite. The manner in which he acted and great lengths he went (& may still do?) to get to his medication was/is incomprehensible and totally out of character to the person I had known.
He lost the core being of who he was and who I had known him to be (from our previous 23 years together) and there is no going back.
My thoughts are will you as you struggle with PSP and your dear husband. I've heard of the side effects of Amantadine and am wondering how much of what you ascribe is as the result of it. I think we will give it a short try but if any side effects arise will quickly stop it. We are not a family who likes taking any drugs and my wife only takes blood pressure and cholorestorl meds currently (weening off carba/levalopa.
When I was 1st diagnosed, my Neuro put me on Cardadopa/Levadopa but told me to stop after 1 month because it made no difference for me. He said it became a matter of having unnecessary chemicals in my system, which is an attitude I appreciate.
He has brought up a few times the possible use of amantadine, but with a cautinary tale about the possible negative side affects. So using it going forward is going to be only if really necessary.
That's the only info I have about it; I wish it wasn't as gloomy as he made it out to be. Have you made a decision yet if you're going forward with her taking it?
hi jim. alan has been on amantadine for a long tome and has no real side effects. does it help? who knows. he also is on stalevo which does help. we tried to take him off it and started taking parkopa it was a disaster. he was like in a coma for about 2 weeks he is back on stalevo and hope that it helps .he still is not good. what does help who knows???? bubbie
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