Hi @valerie
I was lucky this week as my local pharmacy had had a delivery so I was able to pick up this month’s prescription of 12.5/50 mg. What a relief! Fingers crossed for next month.
Marigold
Hi Marigold, glad to hear you have got your Sinemet. Yesterday I got the unwelcomed news again that my pharmacy can’t get my 12.5/50 Sinemet. Thankfully they can get my Sinemet CR 50 / 200, my GP is sorting a prescription for Madopar but I don’t find that as effective. It is such a lottery at the moment one month they have it the next they don’t. Good do without the stress of this. Working with Madopar seems to make me tired and suffer with more fatigue, hopefully they will continue to be understanding, though I don’t know for how much longer that will be the case 
Hi everyone, I can’t really understand why there is a shortage of any drugs for people with Parkinson or any other long term illness for that matter, where does the blame lie, who is in charge of the control of drugs coming into the country. I had trouble getting Sinimet 12.5/50mg and in the end I was put on Sinimet plus which is 25/100mg, problems at first but settled now. Was taking 6 a day of 12.5/50mg I only take 3 a day of the 25/100mg. As for the generic meds, I for one cannot tolerate taking them, they are meant to be the same but they are not for me.
Good hunting for the meds you all rely on for this dreadful disease, it’s a sign of the times as far as I’m concerned!
sheffy
I’m due to order my next month’s supply tomorrow so hope my pharmacy will be able to find some 12.5/50 Sinemet for me. It has been so nice to be back on my proper drug regime for the last couple of weeks! The generic drugs don’t work for me. Only being able to order 28 days’ supply at a time doesn’t allow to keep a reserve in case there is no stock.
My main concern is I don’t know what would happen if I had to go ‘cold turkey’. I was so stiff when I started taking Sinemet and now use both my arms and hands and can even type it would be really scarey to go back to being frozen.
Hope everyone gets some meds!
Marigold
MHD who produce Sinemet has ceased production of Sinemet
https://www.apdaparkinson.org/article/merck-stops-the-manufacturing-of-sinemet-cr/
although Parkinsons UK surest it has moved operations to Italy
https://www.parkinsons.org.uk/news/sinemet-availability
Who to believe. Perhaps Admin can clarify as my wife has been having similar problems getting hold of it. Her Parkinsons nurse suggest using a generic alternative - Co-careldopa
Can Admin help please.
There is so much confusion surrounding Sinemet When my wife told her Parkinsons nurse of the problems she was completely in the dark.
Parkinsons UK need to be raising the profile of this issue and producing a definitive statement on whats going on as well as lobbying government to put pressure on drugs companies.
Problem is apparently worldwide but a lot of people in the UK having difficulties
Hi davech,
Thanks for getting in touch with your questions. I’ll pass them over to the team who will take a look tomorrow and get back to you as soon as possible.
Best wishes,
Min
Moderation team.
Hi @davech,
Welcome back to the forum. I can understand your frustration with the Sinemet shortage and I’m truly sorry that you r wife has been affected by this. We continue to receive regular updates from the company that manufactures Sinemet, letting us know about the supply issues and action they’re taking to ensure Sinemet is available for people with Parkinson’s across the UK. We will continue to share further updates on Sinemet availability as we receive them. You can find the latest update on the Sinement shortage on our website here - https://www.parkinsons.org.uk/news/sinemet-availability.
Our helpline is here to provide more information and support on this matter so feel free to contact us on 0808 800 0303.
Best wishes,
Reah
Got my 12.5/50 yesterday from my chemist and hopefully this a good thing as I haven’t really been myself on the alternative. Hopefully supplies will pick up. I spoke with my MP who has raised issue with S of S for health just waiting on a response from him.
Thanks for your response Reah. Sadly it doesn’t explain the contradiction between your update that states that MHD have moved production to Italy and MHDs own statement that they have ceased production all together
I think some of the confusion is around an announcement in the USA that MSD were stopping Sinemet CR. As far as I can see there should be supplies of 12.5/50 Sinemet in the UK now but the 25/100 tabs are now in short supply - hence the need for all these generics.
Its very unsettling. I did ask at one stage, when all of this started back in November, if anyone knew how many people were affected: ie users of Sinemet. I was surprised that so few of us on this site were having problems.
My fingers are crossed for my visit to the pharmacy next week. If there are no meds I’m going to have to go back and get another script for a generic Ho hum.
Marigold
Hi @davech,
Our policy team are in regular communication with MSD and have searched their site for statements about Sinemet and can’t find anything about stopping production of any products in fact here’s the latest update from July - https://www.msd-uk.com/products/supply.xhtml.
We totally understand that people are frustrated about the continuous issues with Sinemet but the info on our website is the latest we were given. It would be great if you can specify exactly what we need to change and your source of info that would be helpful.
Best wishes,
Reah
Reah
You say you could not find any information about MHD stopping production of Sinemet yet i listed the link in the response to Marigold. Did you not think to investigate this?
https://www.apdaparkinson.org/article/merck-stops-the-manufacturing-of-sinemet-cr/
Why did you not look at it
Hi @davech,
Thank you for your response.
As you addressed your message to Marigold and not to me, I did not receive a notification on the message you sent with the links; therefore, I (unintentionally) overlooked it which I apologise profusely for. Thanks for sharing it again and having read the information on the website, I can see that the decision to stop the manufacturing of Sinemet CR has been made in the US and not the UK.
As mentioned in my previous comment, we are in regular communication with MSD and there has been no suggestion that any Sinemet products will be stopped in the UK. Our policy team has another meeting scheduled with MSD very soon and I’ll, of course, share any updates with the forum following on from this.
Best wishes,
Reah
Reah
Thanks for the clarification i must admit i read MSD’s statement as applying worldwide not just in the US.
Sadly though the other link you posted simply serves to show that the problems with supply of Sinemet that have been occurring for a couple of years shows no sign of improving.
MSD simply issue periodic statements that simply “kick the can down the road”. Can you advise as to what pressure, if any, is the government applying to ensure MSD stop playing with the quality of life of PD sufferers.
I’ve e mailed my MP who purports to be a champion of those with the disease. Sadly i simply received a politicians response that expressed concern but little evidence of action being taken to address this issue
Picked up my prescription today - no problems. What a relief! Hope everyone manages to get their meds without problems.
Marigold
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Hi @davech,
I can understand why you’d come to that conclusion regarding MSD’s statement, however, our policy team will be meeting with them this week and will ask if the statement applies to the UK.
We are aware that the Department of Health and Social Care (DHSC) have had regular contact with MSD and the other pharmaceutical companies who manufacture and supply Sinemet and similar generic medicines (co-careldopa and co-beneldopa) to ensure they are taking the necessary action to resolve the supply situation urgently.
We are also meeting with the DHSC this week around continuity of medicines supply around Brexit and will raise this ongoing issue with them as this uncertainty is troubling greater numbers of our community and urgent action to resolve this must be taken.
If you have any questions that you’d like you’d like our policy team to raise with MSD on your behalf, please send me a direct message with any queries and I’ll happily pass it on.
Best wishes,
Reah
Hi @davech,
Further to my comment above, our policy team raised your queries to MSD and their response is that every country has different products available and they make their own decisions about availability of products based on their market. There are no plans to withdraw any Sinemet presentations from the UK. They will continue to work with us to ensure stocks are provided and any updates are communicated to people with Parkinson’s and their carers.
Please note we also asked them to find out more information about what is behind this decision from the US to put all of our minds at rest. As soon as we get anything I’ll share that with the forum.
Best wishes,
Reah
I asked at chemist today if they were still having problems with sinemet 12.5 and they can’t get any at present another chemist only had part of my prescription. I am very concerned about this as last month had to phone a number of chemists to fill my prescription. What happens if we can’t get what is needed? Jenmek
Hi @Jenmek,
I have passed your concern onto our policy team and they’d they like to look into this for you. Can you please send me the location of the chemists you mentioned via private message so we can look into this for you?
In the event that you can’t get your usual medication, please speak to your Parkinson’s nurse about getting alternative medication in the interim.
I look forward to receiving your PM.
Best wishes,
Reah