My o/h was dx 18 months ago at 61, he was put on Azelext straight away. A year ago his consultant put him on neupro 4mg patches. His symptoms are still very mild just a slowness on the left side and some numbness. We saw his consultant 2 months ago and she said he was still very mild and didn't need to see him for another year but in mean time if he felt he needed it he could increase patches to 6mg. We saw the pd nurse this week and she decided it would be a good idea to start co-careldopa at a low dose. We feel reluctant to start because if side effects and because his symptoms are still very mild and wonder if it would be better to increase the patches as and when needed, I understand this can go up to 16mg. Is it better to start co-careldopa as late in the disease as possible because of side effects and the effectiveness of the drug wearing off. Any advice welcome please.
My hubby has been on co-careldopa for two months now 10/100mg. He was on 3 a day and for the last week after seeing his consultant it was stepped up to 4 but he has been tired since but we were told to give it about a month for it to get into his system and then he would see the difference. On three a day he was so much brighter than he has been for months so I am hoping that the step up to 4 won't squash this. So far he hasn't had any serious side effects and the consultant said he may not some people react differently but if we felt any concerns to ring the PD nurse and she would advise us. Like you we are testing the water with tablets my hubby only being diagnosed in November but looking back probably had it much longer. Hope you manage to get things sorted out. I find PD is a learning curve as you go along. Thankfully there are people on here that have had it so much longer and are very helpful with advice:)
you really need to talk about it with you nurse or neuro as they probably have reasons we do not know.
but since you asked
there are side effects too of D-Agonists and the higher the dose the higher the risk.
levadopa reaches the bits DAs dont reach so have a wider range of symptom relief
i dont believe that levadopa only works for a certain period of time, though others might disagree.
on the other hand it might be toxic and damage nerves (unproved i believe).
i have been told the dyskinesia can be avoided or treated, i dont know how true that one is.
looking into my crystal neep:
i do think health professionals have become very wary of mono-treatment with DAs for an extended period due to OCD and that we will see more early use of levadopa and cocktails of 3 or 4 drugs to avoid the side effects of each (or to get all of them if you are unlucky!).
Thank you visionvalue and turnip, am I wrong in thinking it is the levadopa that causes the Dyskinesia ? This is our main worry about taking the drug, why was the consultant happy to see him in a year but the nurse decided it would be good for him. His personality has not changed at all since being dx and you would only guess he has pd because of the lack of swing in his left arm. My family have not noticed anything yet so we are reluctant to tell them until we have to. Our four children have been told. My o/h still works and we still do everything we've always done that's where our confusion come in, should we wait for more symptoms to appear before taking the co-careldopa ?, or is taking it early beneficial to pd and will it ward off more symptoms appearing for a while.
Molly May, the ultimate expert is the neurologist, not the PD nurse surely?
Whether to start levodopa medication early or late is up for discussion. When the new Dopamine Agonists came on the market in the 1990s all younger patients (under 70) were started on these in preference to the levodopa drugs, but this is no longer a hard and fast rule,the enthusiasm for these drugs waned somewhat because of their serious side effects, like Turnip pointed out.Levodopa medication has better relief from symptoms and fewer side effects. In the end the progression of the disease will make it harder for the drugs to treat the symptoms(whatever drug you take) Have you read the info on drugs you can download/ have sent from Parkinson's UK? Remember drug treatment is for symptom relief ,it does not cure the disease and there is still no hard evidence that any PD drug is neuroprotective or slows down the disease progress. All drugs come with side effects...
Hi Molly May, I was told by a pd nurse that there are two schools of thought here, the older school of thought was to leave the levadopa alone for as long as possible as after a time it can stop working or become less effective, the newer school of thought is to start on it as soon as the symptoms bother you because the wearing off thing and not working is unproven I think that was the reason. I think I agree that the neuro is the expert here unless you feel they are following a book rather than noticing individual symptoms, if you think they are just following their book maybe you could cross question them? Hope helps love Sunray.
As some of you know my husband has had PD for thirty years and is still only 68 yrs old. When he started with pd he was put on too much sinemet plus by the neuro and that was quit common at that time. Then it was found that many pwp's especially the younger ones suffered with dsykinsea, it was many years after the agonists were brought in,it was hoped that if people were started with these it would avoid the dsykinsea problem and as you know it was some time before the problem of the side effects were recognised.
My husband has been on sinemet all these years with the addition of some agonists for about fifteen years. Although we all know the Neuro consultants are the experts our consultant has always said [u]we[/u] are the experts as we live with it all the time and know how each of us feel, which is correct when you think we are all different and react to drugs differently, you may notice how I have said [u]we[/u] that is because our consultant say's if a couple or family member living with pd, we do know best how the person pwp is coping. I appreciate that is only her opinion but she is very experienced and has always had a very good well managed group of pwp's. Unfortunately we have now had to move from her clinic because my husband is in a home and the consultant there has not bothered with my husband and now the pd nurse has left we are without any support, which I now have to sort out, but as my husband is on the best regime due to her good care I don't think he can do much so is not bothered.
I hope that this will explain a little about the good effect of being on dopamine and you will feel happier to start them. My husband did have a brain operation to get rid of the dyskinsea when he was 51 years old and has been free of them since.
Best wishes to you all.
Thank you for your messages, I looked levodopa up on puk site and it does say about the effectiveness wearing off after a honeymoon period of 5-10 years. Our instincts are that as the symptoms are still so mild we should wait at least untill we see the consultant again. My o/h increased his patches to 6mg yesterday so we will be interested to see if there is any difference. I hope we are doing the right thing but it's difficult to make the decision now when everything seems so normal, for which we are grateful. The future scares the hell out of me, I can't think to far ahead.
Hello Molly May,
You are right about the wearing off but that doesn't mean that dopamine will not have an effect it just means you eventually you need agonists to extend the time of the doses. I appreciate that at this stage you are managing very well, but please don't worry or look into the future too much try to enjoy today.
When we went to see our Nuerologist he explained that the sooner you are on the medication the sooner the dopamine can be replaced in your brain. I think with every tablet there are side effects and these have to be considered and yes there is a time limit for these kind of tablets but we look at it as my hubby is now 60 and if it last 10 years he will be 70 and then it will be time to review a new tablet but in the meantime he will have helped halt some of the progression of this disease. It is a learning curve but hopefuly you will have a good nuerologist and PD nurse to help you.
As PD is a progressive degenerative disease with no cure as yet in that no meds have been definitely proved to halt the disease in the brain itself although this is claimed by some for Azilect (Rasageline). However, once the symptoms are alleviated your body will function more normally whereas without them you would not for example do as much and your body would suffer from lack of exercise, i.e. knock on effects so in that sense it slows your deterioration. Someone else might be able to make this clearer or correct me if I'm wrong. Exercises such as yoga, pilates and even walking (I recommend Nordic Walking) will help maintain optimum function.
This thread holds particular interest for me because I went to see my Neuro this week after about 8 months. I had felt unwell a couple of months ago and managed to get my Mirapexin increased to 1.57 mg but it hadn’t seemed to make much difference.
My Neuro started to ask questions and wrote down my answers.
Neuro: How have you been?
Me: OK really. There's probably room for improvement but I'm prepared to compromise.
Neuro: What kind of problems are you having?
Me: My left leg seems to be dragging more. But I can cope.
Husband: And her voice is a lot quieter.
Me: But he’s quite deaf
Neuro: Do you have difficulty swallowing?
Me: Not really, but sometimes I feel as though there's something stuck in my throat, and my voice has become croaky. But it’s not a real problem.
Neuro: I’m going to put you on Levodopa as well as the Mirapexin.
I was aware of current thinking regarding Levodopa, but felt quite shocked as I had been expecting her to keep everything the same and, in any case, I had always expected the Mirapexin to be increased further before being given Levodopa. It was as though she had decided on it before she had even seen me, even though I had forgotten to mention that my short-term memory had deteriorated (Yes, I know!). Will the Madopar help with that? Also, what is the best frequency for taking the tablets? I currently take them at 9 am, 4 pm and 11 pm but find I am wide awake after my last dose.
This is now day three and it’s difficult to say whether there’s been any improvement yet as I have been very busy lately (this being Show week). I am on 100 mg x 3.
I am not surprised that your Neuro put you on levadopa as it is still the Gold standard treatment for PD and it is still very affective for my husband after all these years. I am surprised you are taking one at 11pm and not at all surprised that you feel wide awake, may I suggest you speak to your PD nurse or your Neuro consultants secretary if you can't get to speak to her and explain your situation. I can see it may help you to be mobile in the morning but not really as the medication doesn't stay in the system that long, they usually give a slow release sinemet for that. Sleep is a real problem for pwp's so you don't want to get into that at this early stage unless you can help it. I wish you luck.
I am glad your husband went with you as then your neuro will get a fuller picture, our's encouraged people to take a family member with them for that very good reason and after it is a shared condition it you know what I mean.
Thanks for the information, Vivian. To be honest, neither of us can remember what she said regarding the timing. She might have suggested 5 or 6 pm for the last dose.
How many hours would you say the effect of a tablet lasts? Does 9 am, 1 or 2 pm and 5 or 6 pm sound about right?
Yes that sounds better as all one so late will do is get your brain too active, but of course you should check really. Try to take notes with you and take them down as well, I know how you feel I can't remember very well these days and find going back over the conversation sometimes is a good reminder.There is a PD sheet for keeping a diary so that may be useful for you.
best of luck
Am I right therefore in thinking that it is like a trade off, ? Take levodopa and it will alleviate all the pd symptoms but in return after a period of time you will get the shakes ?. If and when that happens and you start takeng da s to combat these shakes does this stop them. ?.
Dear Molly May,
No that is not how it works, some people have the shakes and some don't in fact a lot of people don't have them.
Both medications can cause side affects and of course everyone is different and respond differently to various drugs, but levadopa is still the one that everyone will probably end up on and doesn't cause the shakes as far as I am aware certainly all the years we have been involved that has not been the case. People like my husband were started on levadopa straight away and it was found that quite a few people developed dyskinsia after 4-5years,( what they used to call the honeymoon period) so by starting pwp's on agonists first it was hoped that they would not get the dyskinsia and on the whole I think that is what has happened.
The problem is that some pwp's on agonists are experiencing obsessive behaviour in one form or another as is my husband now he is also on them but don't forget he has had it for thirty years now, he just amazes me every day I don't know how he does it accept that we feel with pd it's all about the management once you have the diagnoses. He was messed about by different doctors for several years but once we got with his last two consultants they have kept him going really well, unfortunately now he is in a home the consultant there has let him down badly.
If you look on one of the other threads you will see he has been able to do lots of different hobbies since he had to give up work and he motto is if you don't use it you will lose it.
Please don't worry too much as you will find you will be adjusting a little all the time, try to enjoy what your life is like now and deal with thr changes when they come.
my very best wishes
Molly May, don't forget that all the time the disease is progressing, so it isn't just the "trade-off" effect you are suggesting.