Consultant is suggesting Memantine in place of Rivistigmine.
Anyone with any experience of this drug for CBD?.
Memantine: Consultant is suggesting... - PSP Association
Memantine
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Dear Tweet,
We have had experience of using memantine, or Ebixa as it is sometimes called but for Altzheimer's and PSP. It is used, from my understanding, for slowing down the dementia ( cognition) aspect of the diseases.Unfortunately, there is some evidence reported that the drug can cause contractures and stiffness and I am sorry to say that my mother, who had Altzheimer's and my father who had PSP both developed these symptoms. However, for my mother, where the condition had affected her cognition degeneration quite seriously it did help her and gave her a good few years of relief and halted or reduced the speed of progression. Look it up on google and you can read about the side effects there.
We trialled rivastigmine with PSP and gave mum a catastrophic set back. If anything works we found it best to stick to it as there will still be decline and best it it is kept as a slow rather than rapid one. There comes a point where you can't afford a change that will accelerate the progression. Having said that if you are in early stages or have a slow progression (unlike mum) it is worth a shot. Just make sure you have a plan in place to halt the new drug at the slightest down turn . Good luck. X
Watch the side effects. Consider the effect of using it with other meds the patient may be on. Google and read, read, read up front.
Jimbo
It is me again. My advice would be not to use memantine because once the side effects occur you cannot reverse them. PSP is of a similar type of disease to CBD. I would say that the drug did my father very little, if any good and probably more harm. I am sorry to say that my feelings now, from having gone through it for more than ten years are that there are no drugs available yet that are of much benefit at all. If I had the time again I would have given him no drugs and certainly not levedopa.I agree with Jimbo, go on google and read, read, read.Read about every drug suggested to you. It is a very hard concept to digest, but there really is no treatment available yet. We just have to endure it and turn to others on this site for comfort and support.So sorry.
Nader, Why not the levedopa for PSP?
Hi Nader -
When Tony was given Madopar (levadopa) he became confused, aggressive, climbing out of bed and generally on another planet. As soon as we realised what he had been given (on transfer from main hospital to rehab. unit) it was stopped and within a couple of days he came back to us.
Mo
Levadopa is the main drug for Parkinson's disease and does not work for PSP. This is one way that doctors use to get the indication of a PSP diagnosis and not a Parkinson's diagnosis. The chemical released at the site of the nerve cell malfunction is different. Levadopa, used long term, can caused muscle contractions and spasms called dystonia especially in the upper part of the body, the facial and jaw and eye areas and once developed cannot be cured. In actual fact the only sure way of a PSP diagnosis is by brain biopsy after death and so to some extent we are all guessing. Even the diagnosis of vascular parkinsonism or dementia may not give the true condition. There could be several types of neural degeneration happening in the brain at the same time. I think you just have to deal with the symptoms that arise as they show themselves and recognize that any relief achieved is a blessing and a bit of good luck. Always check drugs offered for side effects.
Thanks. Always good to be educated. I think we are all grasping at RX straws hoping for the magical pill that will help in some way to slow down the insidious path of this disease.
