Starting Sinemet today

[Mymummy]

Starting Sinemet today. My mummy has been diagnosed with suspected PSP last month. Any support out there? Would be much appreciated. First dose and mum has already mentioned the dizziness and sleepiness.

[Dadshelper]

Welcome! People have reported varied success with Sinemet. It ranges from a decent benefit to med had to be stopped because of negative results. Listen to the doctors, take it as they prescribe and see what happens. Watch for any side affects which you think the doctors need to know and inform them ASAP.

Good Luck.

Ron

[Mymummy in reply to Dadshelper]

Fully intend on logging any abnormalities. Thanksx

[Karynleitner]

My husband has had minimal results from Sinemet. After he took it for about 6 months weined him off feeling it was unnecessary. When he was off of it, it was easy to see he developed worse and sudden rigidity, particularly in his neck. I continue to give it every morning.

[Mymummy in reply to Karynleitner]

So you realised the benefit of it after coming off them? Did I understand that correctly?

[aliciamq in reply to Karynleitner]

Jack takes 2 sinemet 4x a day and amantadine twice a day. We think it is keeping the rigidity at bay.

[Tippyleaf]

I believe my husband benefits from Sinemet. He felt otherwise and weaned himself off and became incredibly rigid. He has never shown any ‘classic’ Parkinsonism but clearly this drug keeps him more supple. Everyone is different and I am aware some people report no benefit, but it is worth trying side effects of nausea and headaches settled quickly for my hubby.

Good luck hope you find something which helps.

Love Tippy

[Mymummy in reply to Tippyleaf]

Thanks. I appreciate the good wishes☺

[Ellie34]

My mum has PSP and takes sinemet and doesn’t see any benefits from it - however as some people have said once no longer taking it it may show that it is helping in some way. It’s not giving mum any side effects so they have left her taking it.

I hope they can sort the dose so your mum no longer feels any side effects.

[Mymummy in reply to Ellie34]

Thanks☺

[tlovins]

My dad was started on it upon PSP diagnosis. At first we felt like it helped. But By the 6 month mark neuro took him off of it because we were no longer seeing any benefit. He had no bad side effects with it. I should mention he was fairly far along in the disease before he was diagnosed.

[Mymummy in reply to tlovins]

Hmmmm. What an interesting point. Hope he is getting your continued support

[daffodil48]

My hubby was on a couple of different ones Sinemet included but they didn't help and his dizziness was worse while on it. He declined to keep on taking it.

[Mymummy in reply to daffodil48]

It is good though when the person taking it is able to discuss and decide.That's an inner strength in itself! I like dicussing things through with my mum too.

[LuisRodicioRodicio]

Hola Mymummy!

Lamento que PSP haya entrado en sus vidas, pero la experiencia con PD probablemente te ayude.

No soy un doctor. Soy un cuidador de un paciente de PSP-RS.

Comento lo que he leído:

Hay un tipo de PSP llamado Parkinsonismo (PSP-P) cuyos síntomas son muy similares a los de la PD al principio. He leído que en la PSP-P no hay una caída de la presión arterial y en la PD ocurre.

PSP se confunde a menudo con el Parkinson (PD). Un escáner cerebral podría diferenciar los dos.

El medicamento para la PD (Carbidopa / Levadopa / Sinemet) funciona para la PSP-P durante al menos 4 a 8 años, mejorando normalmente la bradicinesia y la rigidez. Luego, los medicamentos dejan de actuar progresivamente y el paciente muestra los síntomas típicos de un tipo de PSP (PSP-RS, PSP-CBS, etc.).

Por correo interno privado, le envío nuestras experiencias con PSP-RS con el deseo de que puedan serle de utilidad.

Abrazo y suerte.

Luis

[Pooches]

My FIL has also been perscribed sinimet. Currently it does not seem to be having any effect on his dystonia or rigidity but on request of the Neurologist we are continuing and headed towards upping the dose. Yesterday after a very frank talk with the neurology I was told that his condition is progressing everything I am reporting is as he expected just happening quicker than we had thought.

I feel sick having to face this with the family most of them are in denial. Its a hard slog. Good luck I hope you see positive results, remember every case is different x. Xx

[Mymummy in reply to Pooches]

It is even more tough when the family isn't supporting your observations. It isn't because you're doing something, I am sure;more to do with other people's ability to take on what they see and process. It's a skill not everyone possesses!

[JCRy]

Hello My mummy!

Welcome to this most wonderful site. You will find so much support, information, wisdom and humanity here. We are all in various stages of the PSP journey, my husband was diagnosed 6 months ago, having been diagnosed with Parkinson's 4 years earlier.

He has been taking Sinemet for 4 years and it definitely helps him. Several months back I mistakenly gave him a weaker dose for a couple of weeks ( on holiday) and the difference was dramatic. Trust the docs on this one, but our experience is only good. I fear that it's effectiveness is not what it used to be, but we will continue it in the hope it is still better than nothing.

Much love

Juliet x

[Mymummy in reply to JCRy]

Any benefit is a good benefit! Thanks for sharing.

[Poppypolo]

My husband has been on sinemet for 6 months he felt terrible on it, doctor then gave him slow release and down from 375m to 200m a day still never felt well. We have now drop it again to 150m a day until we see consultant, he has been feeling very worried, anxious, quite, not good. It is now nearly three years and we still have not got a proper diagnosis of psp or what ever it is. Good luck

[AJK2001]

Hi there

My Mum took Sinemet for a couple of years and it really helped with her gait. I seem to remember she started on a low dose and was also given an anti sickness drug, as she tolerated it well the dose went up to the max recommended and the sickness drug was stopped. We stopped it earlier this year under direction of the neurologist as didn't feel Mum was still getting the benefit and she was having trouble taking the pills, again the dose was reduced gradually and we noticed no change in her condition, just less stress from not having to take so many pills.

So different people find it effects them in different ways, and as the disease progresses it's effects can change as well.

One thing I am afraid you will find with PSP, is it always has a new challenge for you, just when you think maybe you are making progress and getting on top of things, it will send you a curve ball. Take each day as they come & savour the good times, I've found that little things that I would have considered insignificant in the past can give the greatest pleasure.

xxx

[Mymummy in reply to AJK2001]

Wise words indeed. I certainly make the most of each minute. And yes, you could not be more right. Just when you think you can let your guard down.....vroom!

[AnneandChris]

Hello there

Chris was prescribed Sinemet then, Sinemet Plus by our Neurologist, unfortunately it wasn't really helpful and has subsequently been discontinued. I hope that your Mother will benefit from it, but please be prepared for it not to work long term.

Good luck and keep on keeping on,

Anne

[Mymummy in reply to AnneandChris]

Taking each day at a time. Thabks for your kind words.

[Servena03]

My hubby was introduced to a mild dose of sinemet. a year ago, we noticed straight away that he would sleep within minutes and for long periods, this for me was great, and no side effects except for lowering his blood pressure, then 6wks ago he developed a episode of bad dizziness and pain in the back of the neck, Dr referred him to the neuro who treated him for vertigo for 2wks, now off of this introduced sertraline taken for 2wks no difference whatsoever, and neuro suggest leaving off the sinemet, of course I am selfishly reluctant, as being 76yrs and a exhausted carer I need my sleep, fingers crossed. I suggest from experience try a low dose first, we all do react differently.

Good luck and love wishes to you both Jean xxx

[Mymummy in reply to Servena03]

Yes, indeed, us carers need rest too. The experience so far is a good one.

[Tunupup]

Sinomet worked really well for my sister in the initial stages of the illness. I wish you well

[Mymummy in reply to Tunupup]

Thanks for the wishes. You certainly can't have enough.

[DeDeDickson]

My husband has been on sinemet for years. He was diagnosed with Parkinson’s approximately seven years ago. When the diagnosis was changed to PSP about a year ago, he was told by his neurologist that he could wean off of it. Prior to that happening, when we saw Dr Ahlskog at the Mayo Clinic, he determined that Bob had PSP-Parkinson’s and that sinemet could be beneficial. According to Dr Ahlskog, sinemet is not effective with the PSP-Richardson’s variant.

xoDorie

[Mymummy in reply to DeDeDickson]

Richardsons? Thats a whole new term. Will read up. Much love

[Marilyn_cbd12]

And a warm welcome to you! Sinemet is the only drug that has been helpful to my husband with CBD. Only problem he has encountered was when he tried to increase his Sinemet to 1200 mg/day from 900 mg/day. We are working now on a slower-paced increase for him to see if severe dystonia of neck will respond to this change.

Marilyn

[Mymummy in reply to Marilyn_cbd12]

Good luck indeed

[grafixapn]

Sinemet also known as CARBIDOPA;LEVODOPA is a Parkinson's drug. It helps a few that have PSP, but over time it stops working. I'm in the USA, and have put up a website for our local PSP support group. The address is: supportpsp.com

The site only has information and we don't accept advertising or ask for money. About 75% of what is on the website will be helpful for you. I have posted the site info here before, and someone from the UK waa able to get the walker we suggested. The standard walker isn't designed for those w!th PSP. A few weeka ago I posted that my wife's neurologist said he would accept a phone call from any doctor with a patient who has PSP. There is a drug, NOT a cure, but slows down the progression of PSP. My suggestion is to read What I posted, and demand your doctor call Dr. Samanta located in Phoenix AZ.

My wife has had this horrible disease going on 16 years. Ask you doctor if he knows anyone who lived with this disease and still doing well for 16 years?

If he will tell you the truth, other than my wife, the average life expectancy is only 10 years. Even if your doctor makes you pay for the call, it's worth doing. My wife's doctor doesn't make any money from talking with other doctors. What he will tell your doctor is that there is a drug that actually does more than offer hope.

For now just read what we put on the website. Then find the post about my wife's doctor willing to accept calls from any other doctor. I know how you feel, because I have walked in your shoes. iike you I felt helpless. After you read what is on the website, if you have any questions feel free to contact me. Be strong, because being a caregiver is the hardest job you will ever have. I'm sorry but I don't sugar coat anything… I see my job as supplying good information to make you and your loved one's life easier. Just remember you are not alone.

Andy

[Mymummy]

Thats interesting. Will.come back to your reply.

[Evertonian]

My wife has been on sinemet since being diagnosed with Parkinsons 5 years ago. We tried to slowly take her off it a few weeks ago but went back on it because she felt worse. She was diagnosed with PSP last December.......Good luck

Evertonian