Sinemet...advice needed please

[Tinkerbelle258]

Hi, my husband with dementia has been taking donepezil for over a year now. We saw some immediate improvement with his memory and although he is deteriorating, it's at a very slow pace. However, he has now been diagnosed with Parkinsons and been prescribed Sinemet, which he has started taking today.

My problem is the side effects of this drug. Even the consultant said he "will" have hallucinations, not he "may" get them. The Parkinsons specialist nurse who I spoke to gave me the impression that she wasn't too keen on this drug, although obviously she wouldn't say anything outright.

My main fear is that the Sinemet will just make things a whole lot worse a whole lot quicker and is it really worth taking it when atm the only sign of Parkinsons is a very slight hand tremor.

Have any of you had any experience of this particular drug? I really would be very grateful for any help and information you could give me. Jean x

 

[clareglen]

My mum has Parkinson's & Parkinson's dementia which effects are hallucinations, delusions etc. She has been on Sinemet for about 6 years. It has worked well with her Parkinson's, as I know before she started it she couldn't even sit up in bed. So it is effective (apparently old fashioned). I believe it is a bit like taking LSD. There is a school of thought that it is the medication that causes the hallucinations but our consultant reckons it is the disease progression. Personally I think it is a mixture of both but Sinemet is too important to stop in my mum's case. Recently, her dementia has progressed dramatically to more like Alzheimer's in that she can't remember how to do things too as well as the delusions etc. When she first started with the hallucinations our Parkinson's nurse said 'oh dear, did the doctor tell you this would happen' - er no! There is another medication they can take for Parkinson's so maybe you should ask about that. I have read about medical students taking Sinemet to see what happens & they hallucinated. It doesn't happen straight away but after about 4 years in my mum's case. He must have something for the Parkinson's otherwise he will deteriorate & cease up. It is just a dopamine substitute. My mum was also on Donepezil but it didn't agree with her making her agressive & stomach cramps etc.

 

[Tinkerbelle258]

Thanks for your reply Clareglen. I spoke with the consultant again who assured me that the tablets were needed, but they are keeping a close eye on him with a view to changing them if necessary. However, whichever drugs they give him, they all have nasty side effects. He only started taking the Sinemet yesterday so I suppose it's a question of "wait and see"
Thank you for taking the time to tell me about your Mum, it's been very helpful, especially as I thought that the side effects would start almost straight away but you have shown me that this isn't necessarily the case.

 

[Nebiroth]

Sinemet works by increasing dopamine levels in the brain - it works because people with Parkinsons have low levels; their own brain cells which would normally make it have died of (no one understands why this happens).

Therefore, it would be no surprise if healthy people with normal dopamine levels taking Sinemet got side-effects. They would in essence create abnormally high levels of dopamine in their brains.

AFAIK hallucinations are a signature symptom of Lewy Body Dementia - much more so than any other dementia (although all have the potential) and can and do happen whether you medicate or not.

ALL medication have potentially nasty side-effects - even things like aspirin. The law requires that all of them are listed - most people won't get them and of those that do they won;t be severe. And many side effects can be dealt with by adjusting type of drug, dosage, timing and if necessary other medications. My mum has been taking Sinemet for many years and takes anti-nausea medication to counter the side-effect that occurs with only the first morning dose.

 

[Tinkerbelle258]

Sinemet works by increasing dopamine levels in the brain - it works because people with Parkinsons have low levels; their own brain cells which would normally make it have died of (no one understands why this happens).

Therefore, it would be no surprise if healthy people with normal dopamine levels taking Sinemet got side-effects. They would in essence create abnormally high levels of dopamine in their brains.

AFAIK hallucinations are a signature symptom of Lewy Body Dementia - much more so than any other dementia (although all have the potential) and can and do happen whether you medicate or not.

ALL medication have potentially nasty side-effects - even things like aspirin. The law requires that all of them are listed - most people won't get them and of those that do they won;t be severe. And many side effects can be dealt with by adjusting type of drug, dosage, timing and if necessary other medications. My mum has been taking Sinemet for many years and takes anti-nausea medication to counter the side-effect that occurs with only the first morning dose.

Thanks Nebiroth for your post, it has made things much clearer. I agree that all medications have side effects and once I'd really thought about it a bit more I felt much calmer about the whole thing. I think I went into panic mode when the consultant originally said to expect hallucinations! I now have things much more in perspective - thank you.