Hi all,
I'd be very interested to hear from anyone who has switched from Sinemet (Co-careldopa) to Madopar (co-beneldopa, Prolopa) or vice versa. Why they chose to switch and what actually happened when they did.
many thanks,
Cheers
AndrewJohn
Hi
i have tried medopar and switched to Sinemet but haven't found any help from either. What did you find,
PJD
I was diagnosed in November 2013 and originally put on just azilect 1mg once a day. I went to see the pd nurse in March and she was concerned about my walking so she put me on ropinirole 2 mg increasing weekly to 8mg and instructions to take no more than 8mg. I recently went to see my neuro and he took me off the DA ropinirole slowly and put me on madopar 100/25 3 times daily. I am really worried as I have been on madopar now for 2 weeks and feel no better in fact my walking is stiffer and worse and my legs are exhausted after walking about 20 to 30 yards. I am really concerned not least because I wonder if he should of upped the ropinirole to see how I got on first with that rather than going straight on to madopar I did not say anything to the neuro because i thought madopar was the best so looked forward to a better future. Also I am waking in the night with terrible reflux and heartburn since madopar and its difficult to shift even with losec domperidone and gaviscon so I am having a lousy time any advice would be appreciated................Paul
Hi
i was diagnosed in December 2013.
I can't give advice but I can sympathise with you as I am having problems too. Like you my legs are very weak! I am taking one tablet three times a day but I don't feel I get the effect that some people get. The nurse is on holiday and I am on holiday soon so I shall have to wait but meanwhile I feel rotten! I know I am not giving you advice but it is nice to talk to someone who is also having a hard time. I get dizzy in the morning due to low blood pressure so I don't take my first tablet until 10.am as they lower blood pressure even more. This helps a little it's a case of trial and error. Pamela
Hi Pamela
Thanks for sharing with me I hope things improve its trial and error with different meds When you get of bed first thing in the morning swing your legs out of the bed and dont jump up straight away allow the blood to settle back in your legs this should help withe dizzy spells the important thing about PD is take your time now no more rushing about good luck..................Paul
Hi Paul. Thanks for the tip as you say slow is best with PD. Some days are good and some not so good a case of doing what you can when you feel up to it. How do you space out your medication? It seems to work better taken away from meals don't know if that's true as I still don't think I get as much from the Sinemet as I should. Pamela
A friend of mine on this forum told me not to mix levodopa with protein as it affects its absorbtion I am on three a day at 9.00am 2.00pm and 7.00pm i use my alarm on my mobile phone to remind me to take meds. another very useful thing my friend showed me. I have been on madopar 17 days now so looking for improvement in my walking very soon hope you start to get good results Pamela..................Paul
The fact that you shouldn't mix the meds with protein keeps cropping up so must be something in that fact. I spoke to the PD nurse and she said Medopar and Sinemet are the only ones with levodopa so are the best ones to take. Just wish I could get something from them. I will continue with the Sinemet and hope they start to work soon. I hope you start to get some effect soon. Do you feel fatigued. Pamela
Hi Pamela
Yes am ok walking around the house but i went shopping before in the su[ermarket and the top of my legs and hips ached so much and there was nowere to sit down I ended up standing on one leg and then the other to get some releif and that did not really work i was very fatigued just cant get my head around this madopar are supposed to be the best and if thats not working and bear in mind I have been on them 18 days whats left to do now tried to get a pd nurse to phone me but they have not got my detals totally on my own at present I am supposed to have been transfered from the walton centre in liverpool to a pd nurse on the wirrral so i dont know whats going on I just know I could do with some advice..................Paul
Hi
I am new to the forum as I have only recently been diagnosed with PD.
I started on Levadopa (Cocareldopa). I initially took 1 x 3 per day. I have now doubled my dose to 2 x 3 per day, taken at 9 am, 2 pm and 7 pm. After the first 3 days of starting the tablets I felt great but sadly it only lasted for 2 days. I haven't really been given any information on what to expect so joining this forum has been a godsend to me.
Initially I was diagnosed by my 1st Neurologist as having MSA and I decided to go for a 2nd opinon as the prospects of MSA frightened me to death. The one I am under now seems to think it is Parkinson's.but as I have a variety of other problems it has been difficult to diagnose.
I go back to see my neurologist on 9 th Sept so hopefully i will get some advice then as since I started the Levadopa I have been having a lot of headaches and trouble with my vision. I had been diagnosed with double vision before and have prisms in my glasses but my eyesight it seems much worse now and the spells of Diplopia last longer than before. Does anyone else have similar problem to me ?
Regards Jean
Hi. I am still having problems with dizziness. I am still on Sinemet but I really can't say I am getting any benefit from the medication. I a going on holiday soon so I shall continue with what I have for now. I have appointment with something called the Falls clinic on 7th September then with pd nurse on 9th so we shall see if they can get my medication sorted. I had a fall a couple of days ago but fortunately didn't hurt myself these dizzy spells can't always be anticipated in time for me to sit down! PJD
Hi Andrew-john
how are you doing haven't heard from you for a while which medication are you on? PJD
Thanks for all your comments.
PD isn't really a lot of fun and all drugs have side effects. All we can do is try to make life as reasonable as we can. Although we may react in different ways to the disease and the drugs, there are some common features and by sharing experiences we will help each other.
I was diagnosed about two and a half years ago and have been taking a combination of Sinemet and Mirapexin for a little over a year. Some days i ache more than others, I seldom sleep well, but I keep going.
One of my biggest issues is reflux (and nausea). This seemed to get worse when I increased my dose of Sinemet a couple of months ago. Now I think its well documented that the levodopa in both Sinemet and Madopar can cause nausea and other issues but I have heard some suggestions that Madopar causes less gastrointestinal issues than Sinemet and there are one or two research papers way back in the 1970's which support that idea.
i was hoping to hear of some current experiences of people who had made the switch from one to the other and noticed a significant difference (either way).
Cheers
AndrewJohn
I was diagnosed December 2012. I started on medopar but I didn't really feel any help from it so I was changed onto Sinemet and also a slow release Sinemet at night but I found I was even more dizzy so stopped the night time one. I am still on Sinemet 1 3 times a day but still not getting much help. My legs are so weak and I get a lot pain in my neck. I am due to go to the Falls clinic in September and also the pd nurse so we shall see what happens. I carry on as best I can. This is not giving you positive results but it's an opinion. I am off on holiday soon hope this does me some good! PJD
Hi All
A friend of mine told be there is a different absorption rate between these two medications with sinemet the levodopa is not as well absorbed as with madopar and the result of this is that with sinemet the levodopa that has not been absorbed flows round the system making people have nausea and reflux You would think they would both be as effective and have the same absorption apparently not this is what I have been told has anyone else heard this about sinemet......................Paul
- Hi that's interesting perhaps I should go back to medopar .i shall see what transpires from my visit to the falls clinic. PJD
I started on Sinemet plus but suffered with awful nausea and vomitting i struggled on with it for 3 months tried every anti sickness pill going to no avail finally admitted defeat in January this year and my pd nurse suggested swapping to Mdopar and have never felt better now take 100/25mg 5 times a day no domperidone needed , my mother who also has parkinsons takes Sinemet with no side effects , everyone is different .
I was suffering a lot of dizziness but i think that was down to the Azilect .
Hi - I read with interest all the comments made so far, and I hope you will find the following of benefit. I was diagnosed with young onset Parkinson's 5 years ago, and having first been put on DA's for about 18 months my consultant took me off after I bit the bullet and admitted to my PD nurse that I was experiencing significant compulsive behaviour. I was put on to Madopar (Co-carildopa) by my consultant, the compulsive behaviour disappeared, and for the first time in many years I felt really really well - so well that I even took up the sport of Tae KwonDo, and within a couple of months I took my first grading, which I passed with flying colours. My coach was really keen for me to take my second assessment in December 2012, but I had started to feel unwell so I had to reluctantly pull out. Over the Christmas and New Year I was really very ill, where I was experiencing what could only be described as significant dose failure. I contacted my PD nurse first thing in the New Year and got an emergency appointment, at which he put me on to Stalevo. [Incidentally, I noticed that not one of you had mentioned Stalevo in the above posts, and feel I need to "correct" the post by PJD (sorry PJD - I just want to put the record straight......). If you follow this link you will see there are quite a few more levodopa drugs than Madopar and Sinemet licensed in the UK to treat Parkinson's, some of them generic, some of them branded]
That was nearly two years ago..... and I have learnt a great deal about Stalevo in that time. The comment made above about protein having a negative effect on levodopa is absolutely correct. Basically, protein will take the levodopa and absorb it - effectively making it "disappear" - ta da! And there you are, unable to move and feeling like s***! But what is even more important is that Sinemet and Stalevo ought to be taken on an empty stomach - therefore to achieve maximum success you should not eat anything at all for two hours beforehand, and also for between 30 and 45 minutes afterwards. I know if I even sneak a snack eg a carrot stick whilst preparing supper an hour before my meds are due or within half an hour after taking it, can have disastrous consequences and I get limited levodopa benefit or even total failure. If I stick to these rules, I can then eat protein, but basically I need to be sensible and don't max out on the full English breakfast etc! A well-known young onset who has had PD for a great many years advised me to introduce protein to levodopa slowly - therefore a teaspoon of yoghurt on my cereal at breakfast time and to gradually increase this over time, effectively weaning myself on to the protein. Not everybody is the same, and whilst some can take stalevo within 2 hours of their last meal, and max out the protein, others may experience the opposite. It is really important though to not cut protein out of your diet as you are doing yourself more harm than good if you did, and its better to load the protein on to the end of the day rather than the start. One of my favourite lunches used to be baked beans on toast with lashings of grated cheddar on top, but that has had to be knocked on the head, together with the Brie (a particular favourite of mine). If I eat either, I can quite literally feel the levodopa dropping through my boots, hard on the heels of which I experience a massive dystonia attack - which I wouldn't wish on anybody as these are incredibly painful.
Having spoken to my GP and pharmacist about what went wrong Christmas 2012, we think I was either dispensed "the wrong" Madopar by mistake, or perhaps even a counterfeit drug, which according to my GP is a massive problem with regards to neuro meds as they are so expensive, and hence an obvious target for criminals. As I was definitely more stable on Madopar than I've ever been on Stalevo I've recently spoken to my PD nurse about a trial period back on madopar. However he has warned me that my problems with Stalevo are more likely to be attributable to disease progression than the drug itself, and whilst he's happy that I try Madopar again, he's also written to my consultant with the recommendation I go on to Apo-Go sooner rather than later if Madopar doesn't work.
So, to recap, timing of food and a healthy balanced diet including tolerable amounts of protein are really key to successful levodopa uptake. Oh yes, and loads of rest and exercise.
Hope this helps clarify things for you. xx
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