My consultant has suggested that I ‘gradually introduce low strength (12.5/50) Sinemet with half a tablet three times daily over a few days and then gradually increase further to a whole tablet three times daily over the next few days’. She then says to increase further at weekly intervals if necessary.
Has anyone else had this dose regimen? How did they get on? I am wondering what ‘few days’ means - four or five days presumably.I would much prefer a specific time!
I imagine your consultant is concerned with giving you the minimum dose that will still do the trick. This is not necessary. I started on a 62.5mg dose of Madpar (equivalent to Sinemet) in the form of those plastic tablets that can't be cut in half, not without everything falling out anyway.
It was only when I said to my PD specialist nurse that I couldn't tell any difference between taking and not taking a tablet that she doubled my dose to the next size, i.e. 125mg Madpar. In other words the dose was altered according to need rather than minimising the dose.
That was like magic, I was in a supermarket at the time, that tends to be the worst place with lots of movement of people and trolley's needing quick responses to avoid collisions. My movements became normal weaving in and out of all moving traffic just as normal. It was a pleasant sensation as I suddenly relaxed. No longer was I all tense constantly waiting to tip and fall. Tremendous relief. Sadly the effect was short lived.
My doses have a 4 hour cycle. Take a tablet then wait 1 hour for the effect to occur. Enjoy 1 hour of good normal movement followed by 2 more hours of variable results from last / current dose. The last 2 hours are often hardly any better than the the fully off periods.
Very interesting, Pete-1. Are those capsules time release? Try not eating any protein (for an hour) when you take a pill. My meds work better if I limit protein, especially dairy. May not work, but it can't hurt.
Hi Trenny
I was also on Sinemet plus 3 times a day with selegiline and Domperidone but couldn't continue with the Sinemet plus as the side affects was worse than the condition. I was diagnosed 2 yrs ago aged 42 yopd as went to the doctors with a tremor, he gradually increased my medication and that is when I started to feel terrible everyday with nausea and constantly feeling tired.All my energy had gone, I could be talking to someone then come over really tired and almost fall asleep there and then. In After trying the drugs I made the decision to stop Sinemet plus and Domperidone and just take selegiline, I now fee loads better but have learnt to cope with my tremor, which the drugs didn't help with that anyway. Good luck with your drugs.Marcus
Trenny, your consultant probably wants to see how you are doing on the low dose before increasing the meds. The key words are "if necessary" . You should take the least amount of meds you can in order to get the results you need. Overmedicating is a problem that, for me, at least, has worse symptoms than PD. Don't worry about when/if to increase the dosage. Your body should tell you..... good luck.
I agree with Jocee. Only take the amount you need. Try to stay at a low amount as long as possible. I'm on 25/100 4x day. I was d x in 2012 but I had it since 2011. I'm now wearing off more frequently and it's becoming harder to control. Just was prescribed Requio, but no good. Can't swallow the er pill! Take it slow. Good luck to you.
Hi Trenny. Before you start taking sinemet, may I suggest that you speak to your doctor about starting with an MAO-b inhibitor. There are 3 different ones on the market: Azilect, Eldepryl and Parkilyne. Parkilyne is the generic of Eldepryl. This type of medication has a good chance of slowing down the progression of Pd, whereas the others have no proven effect on the progression of Pd. I am not a doctor but I am passing this information on to you as a newly diagnosed patient. If you do or do not take any Pd medication your Pd will still continue to progress at the same rate.
The advantage of the MAO-b inhibitors is that they help you to make use of more of the dopamine you already have in your brain, because they inhibit the body's natural process of breaking down all chemicals that have not been used within a certain time. I don't know what that time is, but rather get the benefit of this drug than taking sinemet, which has serious side effects. MAO-b's have one side effect that I have had experienced and that is the raising of blood pressure levels. So watch your blood pressure levels regularly. Also try to avoid foods that contain high levels of Tyramine. Look up on Google the foods that contain Tyramine.
Sinemet tries to hide certain symptoms, but that is only temporarily. You will regularly have to increase the dosage in order to get the same effect. After a window period of up to fifteen years, you can get whatever benefits the sinemet offers, but at the end of that period the benefits no longer happen. Often, patients find that they get no benefit so have to try other drugs instead, with similar problems.
I was on Eldepryl for ten years, and took no other medication. I was able to come off any Pd medication in 2002 and have not needed to take any further Pd medication since then. I now live a normal life, like most other people of my age, which is now 80 years of age ( in 2014).
Read all about my story on my website, which is: reverseparkinsons.net. I started fast walking in 1994, two years after I was diagnosed in 1992. I have had Pd symptoms since 1963, which is now 51 years. I am the only person I know who has had Pd for so long and who has overcome most of the movement symptoms.
There is no cure for Pd, but WE CAN LEARN TO CONTROL MANY OF OUR MOVEMENTS and live a normal life, medication free!
Fast walking produces a substance known as GDNF in the brain, which actually repairs the damaged brain cells. So we already have our own repair kit for Pd, but you have to do fast walking in order to get the benefit of it. Don't think you would have to do fast walking from day one. You can start for as little as a few minutes to begin with and build up your speed and distance slowly until you are walking as fast as YOU CAN for one hour three times a week.
Good luck! If you would like to speak to me by email then contact me at johnpepper@telkomsa.net.
John
John,
Should I take Parkeline (sp) or Eldypril MAOB inhibitor? Diagnosed 9 months ago but tremor started 1 1/2 years ago. Doctor felt no meds necessary because fairly mild symptoms and I am leading a fully functional active life. I am, however noticing the tremor a bit more...Parkinsons is progressive. I do notice my concentration is less than used to be which can be explained by age, 74 and added anxiety with new diagnosis so my attention concentrated on health.
I think I've asked you this question before and I appreciate your message.
Hi Racer. I can't prescribe medication, I am not a doctor.
I do believe that of all the medications, MAO-b inhibitors are the best. I only ever took Eldepryl and have no experience of the generic Parkilyne. It should be just as good, but who knows?
You must appreciate that I do not keep a file on each person I speak to, so cannot recall all the things you have previously told me. I apologize for this!
It doesn't matter how old you are, you can still start exercising. I can't remember if you have my book or not. In it are all the details of walking and MAO-b inhibitors.
Kind regards
John
Although in general I would subscribe to the slowly slowly method of increasing any meds, you might feel rather nauseous on this starter dose because Sinemet contains carbidopa monohydrate and levodopa. Quote "studies show that the peripheral dopa-decarboxylase is fully inhibited (saturated) by carbidopa at doses between 70 and 100 mg a day. Patients receiving less than this amount of carbidopa are more likely to experience nausea and vomiting" and this explains that although I was violently sick at first, once I had worked up to what I understand is regarded in any case by many as the minimum effective dose, when used alone i.e. sinemet plus 25/100 x three a day the nausea disappeared. Domperidone is the anti-nausea med. generally prescribed to PD patients as others may knock out the little dopamine you have left . I don't really understand why it is not given with the Sinemet start with as I suspect many people decide sinemet is not for them prematurely. As you may discern this is a bit of a bee in my bonnet.
Whatever you do I would recommend taking it slowly, with patience. My husband was started on dopamine (madopar) at too high a rate for him and it made him so tired and unwell feeling that he stopped it. Started at a lower rate on sinemet some months later had the same symptoms, he looked like death. Now we have advice that he should have started at even a lower rate, taking increases verdy slowly. He has been burned though and won't try again, for now is just on Mao B inhibitor that thankfully has no side effects but also no positive effect. He doesn't have the tremor type of pd, at this point just stiff body, no swing of left arm and very slow fine finger movement. Plus all those usual non physical symptoms. So take it slow and don't be inpatient is my advice.
Many thanks, all. I have taken note of the various comments and suggestions. I'll follow my consultant's advice and build up gradually and see what happens. I am reluctant to take yet more drugs as I have Temporal arteritis as well and am on steroids (currently 9.5mg reducing) and other things.
I have pasted this thread into a word file for future reference and will use it as a 'subject for discussion' at my next appointment in March eg Tyramine and protein in meals.
Yes then after a while you get too much caro/levodopa and start to have problems of dyskenisia. So ask your doctor if you can have a carbo/levo booster - a kind of resageline - to take with the sinemet. Do not be. too quick to raise your doses of pills. You might want to start getting some physical therapy, voice therapy, and music therapy, or whatever is available to you so that you can supplement your pill regime. Too many pills are not good. Exercise is very good,and if you do not exercise early on, you will deteriorate more quickly. good luck. Oh, also I have some exercise videos on youtube, for PD
Many thanks, TrikerGrams. Just what I want. I have contacts for local support and am hoping that they will have classes like these. I'll contact them tomorrow!
Why do they tell us nothing?
I saw 'my' consultant (just discovered he's not a PD or movement disorder specialist) who started me on Sinemet. 3 x 12.5 / 50. When I read the leaflet, it said take exactly as directed. I'd had no directions, and couldn't get through to anyone in the neurology department apart from doctor in research department, who said, 'Take one at 8, wait half an hour before breakfast, then take one between 12 and 1, and the 3rd, between 4 and 5.'
Parkinson's nurse suggested a 4th dose. I didn't go for that.
Neurologist had said to double after 2 weeks, to 25 / 100. I waited a bit longer, then took the plunge. Sleep problems, anxiety etc. No help or advice available. Decided to go back to lower dose.
Neurologist has only seen me twice, and doesn't know me at all. I'm very sensitive to medications, and he just gave me blanket, unconsidered and incomplete advice.
I feel really unsupported and fed up with the neglect I've experienced.
Newly diagnosed
SINEMET unavailability in UK.
Not diagnosed but recommended Sinemet.
Drop Foot and Parkinson's - is there a link?
Initial Sinemet Dose
