On and Off

I would be grateful for any advice. My 43 yr old husband was diagnosed with YOPD in October. He was initially prescribed 62.5mg Sinemet 3 times a day which then increased to 125mg. Following his first review last week the consultant has now increased this to 125mg 4 times a day.
When the meds work the relief is great however this is often for only 1-2 hours at a time and more often than not the last 2 doses of the day do not work at all. I explained this to the consultant who does not think anything is a problem. He even thinks my husband should be able to return to work soon. He of course has not witnessed the ‘off’ times like I have. During these my once fit and mobile husband becomes highly agitated and almost frozen in his own body with the mobility of an 80 year old.
The consultant said he would experience a honeymoon period of 10-15 years on meds but so far we have yet to experience 10-15 good days.
He can’t leave the house because he’s scared of the ‘off’ times. I think to be honest he’s in denial about returning to work. The way things are at the moment I can’t see him ever working again.
If anyone can share their experiences of medication on and off times and how they managed these I would be very grateful.


Hi @Momyali,

Unfortunately, it is not uncommon for people with Parkinson’s to experience ‘off’ periods particularly with those who also have dyskinesia - we have information about this on our website here: https://www.parkinsons.org.uk/information-and-support/wearing-and-dyskinesia

Your husband’s situation is bit more complex because his consultants’ view on his condition contradicts your lived experience of witnessing his off periods which of course, isn’t helpful. I think you’d be best speaking to one of our advisers about this so that they can offer you the best support on this and advise you on how best to communicate your concerns to his GP or Parkinson’s nurse should you wish to speak to them again about this. Please give us a call when you can on 0808 800 0303 or email us on [email protected].

I’m sure you’ll hear from other members with their own advice but our helpline is a great place to start for information and support.

Best wishes.

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Thank you. This is most helpful. I will ring the helpline in the morning.

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Your account that your husband’s Sinemet is less effective, or not effective at all, later in the day, suggests to me that some dietary changes might help. I have a few suggestions for you to try:

My first suggestion is for your husband to take the pills on an empty stomach to aid absorption. Try not eating anything an hour before the pill and half an hour afterwards.

Secondly cut out high protein foods for breakfast and lunch, particularly cheese. A lot of people find this helps. The theory is that since levodopa is a protein, it is less efficiently absorbed into the blood stream if is competing with other proteins (but nobody seems to have an explanation of why cheese, in particular has this effect).

Some people are very strict about their no protein regime, but I’ve found it sufficient to cut out cheese or meat at breakfast and lunchtime. For lunch I usually have vegetable soup, or hummous and pitta bread. I am on Madopar, rather than Sinemet, and I take the last pill of the day at 7 pm. I eat my main meal of the day at 8 pm, and then it doesn’t matter about the protein, so I can include meat or cheese.

Personally, I’ve also found it helpful to eat light meals during the day. Regardless of the content of the meal, gorging myself seems to slow down absorption of the levodopa.

Finally, it is very important to avoid constipation. Since constipation is itself a symptom of PD, this can be a challenge, but levodopa is absorbed from the gut, not the stomach, and if we are constipated the levodopa may not get into the gut. You will find a couple of threads on the site on constipation, containing lots of advice. My personal solution is a high fibre diet, plenty of liquids, and a pro-biotic called Symprove.

Best wishes.

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Hi @Jane_L
This is very helpful. The last paragraph about the stomach and gut in particular. It’s given us a lot to think about. We will try some of your suggestions and I’m hoping with some trial and error we’ll get there!
Thank you for this. Your help is much appreciated xx