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.
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.
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
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.
@Reah I’ve been lucky as my local pharmacy has been able to fulfil my regular Sinemet 12.5/50mg again this month. I am just hoping Brexit will not cause more problems. It was interesting to note the recent news coverage re: HRT shortages. I don’t think PD medication has the same headline grabbing power!
It would be useful to know how many of us take Sinemet regularly. Are there any national stats?
Marigold
Hi Marigold having the same probs as everyone else! Only a month or two ago I was on the 12.5/50 same as you, then problems arose were I couldn’t get any. My parky nurse advised me to go onto Sinimet Plus 25/100 so instead of taking 6 per day I could take 3 instead. Now they can’t supply me with Sinimet Plus, but they can get the 12.5/50 so I am back to square one! Not complaining at least they can get me some otherwise it would have been Generics, but I have been told that when I come back from holiday to speak to the parky nurse again because not sure if they can source any more, and that is Boots the chemist and they are usually pretty good. God Help Us!!
It’s great that you were still able to get your regular medication. In response to your question, there aren’t stats on the number of people who take the drug, but there are stats on the items that are dispensed per month - https://openprescribing.net/chemical/0409010N0/. We know that Sinemet and co-careldopa (the active ingredient in Sinemet) is one of the most popular drugs prescribed for Parkinson’s.
Also, we’re working closely with MSD (who manufacture Sinemet) and the Department of Health and Social Care to ensure there are arrangements in place to ensure consistent supply of these medications in the event of a no-deal Brexit. We’ll be communicating with our community fairly soon what we’ve been doing and what they can do if there are concerns.
Hi Reah thanks for your reply the pharmacies that I have tried are in the Clacton on Sea area . Two didn’t have any 12.50 one had a limited supply which was 100 I take 300 they weren’t sure if they could supply the rest of the prescription so I am waiting to hear and trying other pharmacies in the meantime. So it is quite a nuisance. Jenmek
Thanks @Reah. It is interesting to see the number of items issued across the different CCGs. I assume someone in the Department of Health has a further breakdown even if just to support negotiations with the Pharmaceutical industry! It is a bit concerning that a drug that is used daily by so many people can just disappear off the shelves of local pharmacies. I am keeping my fingers crossed for my next prescription.
Marigold
Hi @sheffy
I think I might be in the same position as you next month. I take 2 x 12.5/50 @5 times a day so I can also use 25/100 as an alternative but I do not get the same results. Its the not knowing who might be able to supply something and then having the get the right prescription from the GP and then getting to the pharmacy before it is dispensed to someone else that is a real pain!
Marigold
The mail order pharmacy, Pharmacy2U, just bounced my Sinemet Plus prescription back to me because they can’t source any, so looks like I’ll be spending tomorrow trying to find another pharmacy that has some. It would be really good it this situation were fixed!
A bit worrying to hear that the mail order pharmacy can’t supply. I am due to submit my next prescription request tomorrow so my fingers are crossed. I can’t drive at the moment so not sure how I could track down supplies like I did last time. I still don’t know what will happen if I can’t source anything.
Marigold
I managed to get some from my local Well pharmacy today. This after being refused it from my GP dispensary, although they had it, because they don’t deal with electronic prescriptions!
Yet again my wife is experiencing problems obtaining Sinemet 25mg/100mg and i see from your web page @ https://www.parkinsons.org.uk/news/sinemet-availability
that supply problems are anticipated to last until October 2019 (which we are already into).
What exactly is causing the supply problems and what are Parkinsons UK doing to bring pressure to bear upon Merck Sharp & Dohme Limited (MSD) to resolve whatever the issues are
The situation is being worsened as our pharmacist, Boots is having trouble sourcing the generic alternative Cocareldopa presumably because others are also having problems sourcing Sinemet.
Hi i am having problems with supplies of sinemet too . Went to collect prescription for next 2 months and was told can only supply 6 days worth of sinemet plus , no more expected can have generic but only have enough for 1 week . Suggested i get a different prescription for 12.5/50 and take double.but can give for a month supply then not expecting any more deliveries of sinemet 12.5/50 or 25/100 or generic and dont know when will have .
I’m sorry that you are having trouble to obtain your regular prescription of Sinemet. Hopefully knowing that you can have supplies in some way or another for a month gives you some comfort, but you should be able to discuss this with your GP, pharmacist, consultant or Parkinson’s nurse. Any of them should be able to work out a plan with you to ensure you have a supply of Sinemet or a suitable alternative. Of course, you can also call our helpline on 0808 800 0303 to discuss this.
In case it helps, you can check the latest information on Sinemet availability here.
I think the most worrying thing is that we never find out until we go to pick up our prescriptions. Then there is the need to find out what might be available and where from - but the GP won’t know, nor the Consultant. The pharmacist probably won’t know either and, for me, the chances of contacting a nurse are minimal so my plan will end up as high stress crisis management especially as I am also having to track down HRT supplies!
Marigold
I agree the GP and pharmacist were no help . They have no knowledge of what is happening with the supply . The nurse advice was the generic which also unavailable
Hello All,
This is a sorry state of affairs, and I as well as you yourselves and everyone else for that matter, wonder when all the shortages of this drug ie., Sinimet and/or Sinimet Plus come to a final end. It would be nice to know what has caused the shortage in the first place, my husband believes the manufacturers cannot keep up with the demand for these drugs, which is the logical answer but why can they not?? It needs just one of the manufacturers to explain to the public where the problem lies and be honest with us as to the outcome…sheffy x
I’m now unable to get any Sinemet via the pharmacy, they have tried all the other pharmacies in the area without success. I’m fortunate in that I have enough to keep me going till mid-November so hopeful that supplies will be reinstated before then. I’m on the 25mg/100mg Sinemet Plus - I guess that if I have no luck by the beginning of November I’ll see what alternatives there are…!
