Sinemet warning - this drug is addictive

You’re most welcome Barry

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Whoops sent too soon! As I said you’re welcome but of course I’m aware that I couldn’t actually answer your query re addiction and Sinemet. My husband started out on 25/100mgs x 3 daily five hours apart. Now he takes 25/250 x 4 daily, four hours apart, but this has only been in the last few months as some of his symptoms became a bit less manageable. The Ropinerole was a dopamine agonist which helps the Sinemet stay in the system longer (I think) but for my husband it wasn’t a good drug. In retrospect I wish he’d been offered something else but at the time the PD nurse said it would be the most effective. We were vetted as to whether he had any family history of addictive behaviour such as gambling, alcoholism or other compulsive behaviours, as Ropinerole can exacerbate these and become very problematic indeed for a few people who take it. Hopefully you will remain on your very low dose of Sinemet for a few years before you need to up the dosage or add another drug. Wishing you well going forward. Jean

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Thanks so much for this explanation Jean1,
I have had PD for 3 years now and my symptoms have been very mild but now my neuro is suggesting I use rasagiline/ropinerole.
I agreed and took a tablet, and the symptoms I had were horrific.
I couldn’t form my words, felt very light headed and my thoughts were disrupted.
I stopped after that one tablet and yes, did tell my neuro.
I am seeing him again in a week and will suggest the Sinemet.
Almost the same symptoms I had with a anti seizure, medication,Topomax.
Honestly it was the worst medication I have been on. Not one person I know has not had terrible reactions to it.
So just in case anyone is prescribed it, please be careful.
I see they now tout it as a diet drug.

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Many thanks Jean, my best wishes to you and your husband.
Barry

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Sinemet and Madopar are the gold standard treatment for Parkinson’s Disease. I have taken Sinemet successfully for 30 years with very little side effects. It’s a wonderful drug for many. The dopamine agonists can have mind altering effects, but the numbers are low. Sinemet is not addictive. I think PD UK admin should prevent people making sweeping statements and worrying people.

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Ropinirole was pretty awful for me. Sinemet excellent!

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Hi sallyjt, the same goes for my husband. He’s been taking Sinemet in slowly increasing doses for over 8 years now. Ropinerole was added after a few years as the PD nurse felt he needed something else to help control the symptoms as they progressed. As I’ve mentioned in my previous post, he eventually stopped taking Ropinerole earlier this year and Safinamide was added. So far so good… I agree that (especially) for someone just diagnosed with PD, it must be quite unnerving to read something alarming about a drug they’ve just been prescribed by their neurologist. In the case of Ropinerole there will of course be many people who benefit greatly from this drug. In our case it didn’t benefit my husband so was discontinued. Simply put, it is always advisable to address any fears or questions about the drug you have been prescribed with the person best qualified to answer - your neurologist. Jean

dopamine dysregulation syndrome (wanting to take more and more of the medicine) has been reported for co-careldopa, but it is quite rare. it is more common for dopamine dysregulation syndrome to happen with dopamine agonists.

co-careldopa sometimes exacerbates or causes addictions to other behaviors, e.g., gambling, sex, etc. in my case, the problematic behaviors are reading, computer programming, and just plain thinking. i try to keep my co-careldopa at the minimum, but then i lose time to the tremor. it’s a choice of which way i want to lose control. :slight_smile: again, dopamine agonists have a higher likelihood of causing this kind of trouble.

hope this information helps!

best wishes,

joe

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Hi,

I was diagnosed with Parkinson’s 10 years ago and have had medication increased considerably. I now take 9 Co-careldopa 12.5/50mg over the course of the day, plus Safinamide 100mg, Stanek 50mg/12.5/200mg and Stanek 100mg/25/mg/200mg and Half Sinemet. I also have a rotigotine patch for Irritable legs which is a godsend as I suffer really badly with it. I also take medication for clinical depression which I have had most of my adult life. I have had no side effects from the medication. I have hallucinations which may be because of the Parkinson’s medication or it’s just my Depression, only time will tell, but I do take 3 Anti-psychotic tablets at night which has helped and I put my name forward for a research programme for CBD, which is coming to an end soon, and I will be told whether I had been taking the real drug or just the placebo, but I think I had the real one as I feel a lot calmer and my Hallucinations have diminished. So I would like to know where you got your information from. If you read all the leaflets from your medication most have the same side effects and not everyone has them. If you look at paracetamol the side effects are awful but you still take them. I just thank the Doctor’s for looking after me. Stop scaring people as it is bad enough trying to live with Parkinson’s and if tablets help then you should take them.

And your years of research in what capacity leads you yo write this post ?
Parkinson’s brings its own depression/anxiety and mood swings for many of it’s sufferers how do you distinguish the 2 ?
As the wife of a Parkinson’s sufferer diagnosed 12 years ago I can honestly say sinemet and madopar have been the saving medicine that maintains my husbands wellbeing as best as possible. I distinctly recall him first being given Sinemet after diagnosis and it was wonferful was like having his old self back again.
Sinemet may not work fir everyone of course as everyone is different. But posting a blanket statement without back up information seems to me scare mongering :person_shrugging:t3:

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Your comments are very reassuring.
Thank you

Hi Baz51, the comment is my own experience of Sinemet. When I take the drug on an empty stomach in the morning, I find my mood alters quite dramatically after about 45-60 minutes. The best way to describe it is as a feeling of euphoria. That’s why I think it is addictive. The effect is less noticeable later in the day - and has decreased over the months. I was first prescribed a low dose of the drug in the very early stages, and at that time I wasn’t aware of the effect. In fact I didn’t even know why I was given it ! So I advise caution before starting Sinemet. Hope this helps.

I think it’s worth adding that one of the mood-altering effects of Sinemet I’ve noticed is the heightened sexual awareness caused by the drug, especially after the first tablet each morning. But the effect is prolonged by Opicapone, I believe.

I might well start a separate thread on this issue in the future.

My husband had been happily on sinemet for 9+ years until he was prescribed entacapone additionally. He then also increased the sinemet too much too quickly, and couldn’t be persuaded to lower the dose. He was obviously enjoying the greater dopamine hit, and was unaware of just how bad the dyskinesia it caused, was. Even though he was unable to receive dental care due to all the excessive unwanted movement, he carried on with the higher dose and has lost 3.5 stones in weight whilst awaiting completion of hospital dentistry over the last 9 months. I agree that people should be very wary of increasing the dose, particularly when combined with entacapone or other such meds

Yeah, I’d be careful with Sinemet. I’ve had friends who got hooked on it and found it tough to quit. If you’re just starting out, make sure to really talk it through with your doctor and consider all your options.

Hi everyone

I was diagnosed in 2009 and during these last fifteen years I have been under three different consultants. Six months with the first one, eleven years with the second and five years with my current one. I have also had one-off consultations with around ten to twelve various other consultants, surgeons and other medical professionals for a variety of ailments, some Parkinson’s related and some not.

I have tried most of the available Parkinson’s drugs, namely:
Sinemet and Half Sinemet, (co-careldopa, Carbidopa/Levadopa) as well as the generic varieties.

I have also given Rotigotine patches a go and tried Madopar Dispersible, Pipexus, Sastravi, Amantadine, Mirapexin, Opicapone, Safinamide, Rasagiline and the Apomorphine needle.

I am currently awaiting a date for DBS surgery.

Only two of the above seem to give me any sort of relief from Parkinson’s symptoms without too many side effects. They are the Madopar Dispersible and the Sinemet. I take both of them at the same time six times a day, roughly every two and a half hours. My biggest problem is wearing off and I am hoping that the DBS will provide a solution.

Everybody reacts in a different way to the the different treatments. Don’t be put off by another person’s experience. Discuss your treatment with your Neuro consultant/GP.
Don’t be put off by potential side effects. Not everyone has them. Keep your GP, your Parkinson’s Nurse and your consultant up to date with your reaction to your medications. If it’s not right for you then let them know and ask them to consider prescribing alternatives. Don’t just stop taking your meds, your body needs time to adjust. For everyone who has a bad experience with a drug, there will be plenty others who think it is the best thing since sliced bread.

I wonder how Sinemet can be any different from any other co-careldopa as it has the exact same ingredients

My local pharmacist suppliers changed the packaging of my generic co-careldopa from a blister for each tablet into child lock phials, a cost cutting exercise and not a clever thing to do especially for a lot of people to access them.
Had to change my pharmacist to Boots, and request Sinemet as they still do the single tablet in blisters

Sometimes the formulation is different and it gets absorbed at a slightly different rate so people ca notice a difference with the same dose. Most people don’t, so generics are fine in general. Parkinon’s meds shouldn’t come in child locks, my come in a screw top vial but are easy to open.

Sinemet (co-careldopa) and madopar (co-beneldopa), otherwise known as L-dopa, are the single most effective treatments for Parkinson’s disease. The majority of people have no problems with taking them (early on) and receive significant benefits. A few people have side effects and require medication changes. As time goes on the medications become less effective, and yes there are more side effects, but the benefits remain. We should not scare newly diagnosed people away from drugs that will give a much better quality of life on the off chance they might get side effects.

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