Sinemet shortage status

Hi @madoch2002 and @T5

Welcome to the forum.

We spoke with MSD late last week and they informed us that there will be intermittent supply issues with 2 Sinemet products (Sinemet 12.5mg/50mg 9x10 tablets and Sinemet Plus 25mg/100mg 10x10 tablets) until September. They have stated this is a precautionary measure as they’re trying to get more stock into the market to fulfil the demand. However there may be times when pharmacists cannot access Sinemet stock. We have more information on this via our website here - https://www.parkinsons.org.uk/news/sinemet-availability.

madoch2002, I’m really sorry that this has affected your husband, I know this is far from ideal, however, for more information and support on this, you can give our helpline a call on 0808 800 0303.

Best wishes,
Reah
Forum Community Manager

Hi Rea,
Thanks for the latest update.
This is really disappointing especially as I had been optimistic after the last update and put in a prescription request for Sinemet 12.5/50mg. Looks like I’ll have to chase up some sort of alternative again and then pester the GP for yet another prescription. If it goes on until the end of September/October it will be almost a year since I had to start searching for medication. It would be nice not to have to worry about it every month!
Marigold

Hi @Marigold,

I completely empathise with you and I’m so sorry that you are having to go through this. Hopefully, the tablets will be available again in September, until then, I’ll do my best to keep you all updated.

Best wishes,
Reah

Hi Marigold

I got my prescription back and tried different chemists until I found one who had a supply. Bit
tedious but worth trying.

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 :slightly_frowning_face::slightly_frowning_face:

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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