Been dygnosed nearly two years, just started sinemet 8 weeks, no difference with symptoms, on 3 tabs a day, read that if l’dopa doesn’t work, you haven’t got pd, wondering if anyone else had this experience

Hi @jimmydook56,

The medication used to manage Parkinson’s can affect everyone differently, so your reaction to it may differ to other people on the same dosage. So my advice to you would be to speak to your GP or Parkinson’s nurse about your medication as they may need to review it or even increase your dosage.

For more information and support on this, please contact our helpline on 0808 800 0303 or email us [email protected].

Best wishes,

Hi, does anyone know what the maximum amount sinemet a neurologist will prescribe a day is, I’m taking around 1100mg a day I would be grateful if someone could help me find out

The erratic availability of Sinemet continues. and shows no sign of improving. This has been going on for over two years. The manufacturers Merck, Sharp & Dohne issue regular updates as to the current situation but all they do is kick the can down the road. They never explain in detail what the problems are.

Ive contacted my own constituency MP Justin Tomlinson Swindon North, the local NHS CCG in the past and have now escalated the issue to Boris Johnson in his capacity as Prime Minister and Matt Hancock Secretary of State for Health and Social Care

What are Parkinson’s UK doing to address this issue that has such an impact upon sufferers quality of life.

Hi davech,

I’m really sorry that you have been impacted by this. We are in regular communication with MDS and on our latest call with them last week, they reported that 4 of the 6 products are in stock and all should be in stock by the end of this month. This web story gives a little more info and also some info on Madopar too.

We’ve also been feeding in the information that people with Parkinson’s report to us - locations of and products of stock issues to MSD and robustly challenging them on their stock arrangements.

Additionally, we’ve also been sharing supply problems regularly with the Department of Health and Social Care as they’ve been closely monitoring this situation. We’ve been sharing information with professional bodies, as nurses and consultants have been seeking up-to-date information on the supply issues.

We know this ongoing issue is less than ideal so we’re doing all we can to exert pressure on MSD to resolve the problems as quickly as possible.

I hope this answers your question and please remember you can always give our helpline a call for more information.

Best wishes,


Thanks for your response. The problem is that MHD appear impervious to the distress they are causing their customers and seem content to put out monthly press releases that simply move the goalposts and push the anticipated resolution date back a further month. i no longer trust a single word of their press releases. i doubt also that they any notice of the Prime Minister and Matt Hancock Secretary of State for Health and Social Care if indeed they actually raise the issue with them.