Hi
I’m wondering about how rigid you have to be with the timing of taking your medication. I’m on Co-careldopa and am advised to take an hour before food. I do find this difficult sometimes, say when I’m going out in the evening and don’t know exactly what time i might be eating.
For instance, just now i thought id taken my tabs and waited 45 mins, was going to have something and discovered the tabs still on the table. Now I have to wait another 30-60 minutes!!!
Do others find this a problem. I suppose I’ll get used to it eventually. Its all quite new at the moment.
Thanks.
Hi Alfsnan, my husband takes Sinemet and was told to take at least an hour before meals. As you say it can be very difficult to strictly adhere to this regime. He too has thought he’s taken his meds and just as I thought the hour was up realised they were still in the box. So frustrating and a very dried up dinner too! It’s always a dilemma when out for the day or away, especially with other people, as it’s not always viable to eat at the exact time to suit his meds. So inevitably there’ll be the odd time when he may only wait about 30mins or occasionally less. I must say though that it doesn’t seem to make much difference, and certainly not enough to notice, but obviously it can’t be good to do it too often if, as they say, digestion of food affects the efficiacy of the meds. Now I’d like to ask a question of anyone else reading the posts. We have noticed after taking his 5pm Sinemet and waiting an hour as per before our evening meal, his tremor can become much worse. No idea why that happens at that particular dose or time as he can easily eat a bowl of soup in middle of a day with as steady a hand as me and in public too! It’s quite upsetting to see him struggling to control it. Doesn’t make for a relaxing evening meal that’s for sure. Anyone else taking Sinemet who experiences this ‘strange phenomena’ ?! Jean
I have an alarm set on my phone so never forget my tablet. Well hardly ever as on the odd occasion I turn the alarm off when Im in the middle of doing something.
I have never worried about taking my medication near meal times. Although after being diagnosed over 4 years ago and starting to feel quite unwell recently I think I’ll start leaving some time after taking my tablet before eating. I was never told this.
I realise this is no help to you but its interesting reading people’s different experiences.
Thanks for your replies x
Hi, I too find that having taken Sinemet 125mg, my tremor worsens after a while, before easing off. Bizarrely, it is worse with half Sinemet CR. Overall though, the Sinemet seems more effective if don’t eat for a while before and after taking the Sinemet.
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Hello to everyone who has contributed to this post, the issue of medication rears its head again. I could be wrong but I suspect it is the area in the whole Parkinson’s roadshow that causes most anguish and a ‘am I doing it right mentality.’ Understandably because it is important so it has to be taken seriously.
If I might throw my tuppence worth in (showing my age), I will give you a picture of what I do with the benefit of almost 13 years experience. It is only my personal experience so you may think differently and that’s absolutely fine, but maybe it will help someone manage their situation with a bit more confidence.
The actual medication I’m on is not the issue here it’s about timing and you will have to bear in mind your own barriers to taking medication and weigh up how strict you need to be, this is only what I do based on my experiences which have led to my being relaxed within reason to my medication.
In the beginning I was very conscious of timing since it was stressed the medication should be taken at set times. I didn’t know what would happen to me if I was late, or what on and off periods really meant - at a time when my symptoms were mild, it was sometimes hard to tell. What quite quickly became apparent was that this did not always fit in with my busy job or, as others have commented it you are going out for the day or evening. It felt like my life was being run by meds and the clock which I can’t deny it is of course, but I started to tweak things just a little so I could manage better. Over time my Parkinson’s and meds have changed but I still use a medication framework that gives me a little flexibility and I will try to explain this as clearly as I can.
I currently take meds 4 x per day, 4 hours apart.
I am a morning person so usually have the first dose around 6.30 so I can get going. However it can vary between 6 and 7 depending on how I am on waking and what I;ve got on that day. If for example I have to go out relatively early or I am not moving too well, it will be nearer 6 to allow time for the meds to kick in. have a space before eating and get ready for the day On other days it will be nearer 7…
Subsequent doses are 4 hours apart but this is not rigid every day, sometimes I will feel that I am running a bit low before the next meds are due - that happened a few times during the recent hot spell - or if I am going out shortly before the next meds are due I may take them 10 or 20 minutes early and then can get on with my day.
I will try to take the next dose at 4 hours plus however many minutes early I had the previous dose but don’t agonise over it and 4 hours will do.
An ‘early’ dose is usually as I said 10 or 20 minutes no more than 30 but that’s rare.
The aim is simple, with some minor adjustment Parkinson’s fits into my life not the other way round. It’s not infallible. I find if I get engrossed in something it goes out of my head and I will find I’m an hour late; entirely my fault so take the meds, wait for them to kick in and put up with stopping and starting or whatever It’s a small price to pay for a day that works for me.
I have learned to relax about my meds and go with it and trust my judgement about what I can and can’t do. The basics still hold true, the start time may vary within an hour but after that I do aim to have doses more or less 4 hours apart allowing appropriate tweaks. It seems to work for me anyway and most days I don’t feel meds are ruling my life quite so much.
The exception to this would be if I ever was in hospital. I was in hospital a couple of years ago not able to self medicate and my meds got totally messed up and what should have been a few days turned into 2 weeks, 3 weeks rehab and I went right off my feet. I did keep asking but sometimes it would be hours late. Another time I will raise a formal complaint straightaway, no messing.
The key point is you know better than anyone how your meds affect you. Yes read about what they are for etc, be guided by your medical team but most of all have confidence in yourself to know how your meds can fit into your life with maybe a little flexibility. Timing is important and I’m not suggesting otherwise but I do think there is a bit of room for manoeuvre if you can relax about meds and not get too hung up about the clock if your Parkinson’s doesn’t cause problems that demand accurate timing.
I will say again it works for me but recognise it won’t suit all and that’s fine. You can make your own minds up, you don’t have to agree but it might spark something off in someone that allows them to see their meds a bit differently.
Tot
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Thanks Tot, very helpful x
The second last paragraph of Tot’s email seems to capture the important points. After 8 or 9 years managing this condition neither the Neurologist or PD Nurse has even mentioned timing of food/medication let alone the effect of protein, so you have to take control yourself.
I try to stick to the ‘rule’ of taking Sinemet at least two hours after eating and don’t eat until at least one hour after taking meds.
However, I incorporate high levels of flexibility. I achieve this in part by taking additional Madopar, as required, over and above the four prescribed doses of Sinemet. If I’m meeting people, drinking alcohol, or eating a large steak, then for sure additional meds required.
Hi Tot
Some very useful information here.
My husband also had his meds quickly messed up in two recent hospital stays. I have been struggling to get information about the effect of Madopar modified release being given instead of normal Madopar. I actually witnessed staff about to give him the wrong medication on two occasions and once I arrived on the ward just after he had been given the wrong tablet. The advice given was that he should continue with normal medicine as planned. Four hours later he received the next dose. Approximately after receiving this dose he started to hallucinate and it steadily got worse. There were a few similar instances in his 3 week stay. On a couple of occasions he could not feed himself. Hand /eye co-ordination affected. Can anyone help with information? He was taking Warfarin and I suspect that errors contributed to blood disorder which then led to very bad nose bleeds which could not be controlled without use of “rhino” which is balloon inserted and then inflated in nostril. This happened on 3 occasions during his hospital stay.
Marnico
That sounds horrendous Carmen’s as I’m sure it was. I later found out that hospital policy did allow a patient to self medicate if they are able to do so. My medication was also initially written ùp wrongly and my Parkinson’s drugs split into 2 groups - fhey would eventually bring me half saying they were my Parkinson’s drugs and that the remainder would be brought with the routine drug round. They wouldn’t believe they were all Parkinson’s drugs despite my showing them the blister pack the chemist fills for me. I have to admit to being shocked not so much they didn’t know but they took no notice when I tried to explain.
I wonder if you might get the information you are seeking from your pharmacist. I have always found them very helpful.
Tot
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I found the hospital to be ignorant about my medication needs and took it all off me. I knew this would happen and took the same meds in my washbag so i could still self administer. Right or wrong i knowxmy condition better than anyone
I echo everything you have written T. I have 30 years experience of sinemet and while guided by doctors, I do my own thing and rather than go with set timings, I go by how I feel and adjust timings frequently. My biggest problem nowadays is what I eat and when because I am finding absorption of the drug and response to it more difficult to refine. It’s complex. I dread the day I ever have to be hospitalised and not able to self-medicate!!!