I was wondering if there are members of this forum who have been on large doses Levodopa - Madopar or Sinemet only - up to 1100 mg per 24h, for 5+ years.I would be grateful if you could comment on your present quality of life, and do you think that things could improve if other medications are added to your daily regimen.
My Neurologist told me that he didn't know what else to prescribe me but he would be happy to increase my Levodopa dose, even though I have reported to them that I literally could not function on the dose I am or have ever been, and I have been trying to reduce my Levodopa intake and not to increase it.
Time to change Neurologist?
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Daisies22
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How is it not working for you? Are you having side effects? Or is it just not effective? Many doctors don’t recognize symptoms from side effects and think that increasing levodopa is the best way to treat us, when sometimes it just makes things worse. What is your med schedule?
I only take levodopa, between 700-900 mg daily. I go off of it at night, which I don’t recommend because it is a miserable experience, but I really don’t have a choice (a long story). I have tried other meds without success.
I copy and paste below what I wrote to another member of the forum.
Hope this gives you an idea.
The effects of the Madopar I'm experiencing are the polar opposite of what is expected. It paralyses me, the onset of the paralysis is very sudden (10-15 minutes after taking a capsule), lasts 60 to 90 minutes during which time I cannot move a muscle, no voluntary movement is possible. If I need to move my finger someone has to do it for me. I regain my ability to move (100%) when the Madopar starts to wear off. I go through this hell 7 times a day as I take 7 Madopars IR. All is reproducible - every day, 7 times a day.
During the 60 to 90 minutes when I can't move I also experience extreme muscle stiffness (some kind of dystonia perhaps) whole-body shaking, and pain.
The odd thing is that when levodopa wears off sufficiently I just get up and walk off unaided. My iPhone tells me that my walking asymmetry is most of the time zero percent, or 1% today. Other parameters like Double support time, walking speed, and walking step length are normal too.
I have tried to extend the time between dosing.What happens reminds me of a withdrawal from a dopamine agonist - a sudden and very intense reaction with mainly cardiac symptoms plus extreme muscle stiffness causing the pain and the shakiness. So I can't even extend the time between two individuals doses let alone skip a dose.
Thank you for the suggestion. I have read previously on this forum that taking levodopa with food helps. I think it does make sense especially if the patient is female with very low BMI like me. I have tried previously taking madopar with cheese but it's difficult to judge how much I'm allowed to eat, and I love cheese.
I need to go down. The effects of the Madopar I'm experiencing are the polar opposite of what is expected. It paralyses me, the onset of the paralysis is very sudden (10-15 minutes after taking a capsule), lasts 60 to 90 minutes during which time I cannot move a muscle, no voluntary movement is possible. If I need to move my finger someone has to do it for me. I regain my ability to move (100%) when the Madopar starts to wear off. I go through this hell 7 times a day as I take 7 Madopars IR. All is reproducible - every day, 7 times a day.
During the 60 to 90 minutes when I can't move I also experience extreme muscle stiffness (some kind of dystonia perhaps) whole-body shaking, and pain.
The odd thing is that when levodopa wears off sufficiently I just get up and walk off unaided. My iPhone tells me that my walking asymmetry is most of the time zero percent, or 1% today. Other parameters like Double support time, walking speed, and walking step length are normal too.
Apologies for the delay in replying, just survived 1 h shaking.Forgot to mention some worrying symptoms - arrhythmia, elevated pulse rate. They are always present when I take madopar.
To answer your last question, yes this was my first reaction to Madopar for which I ended up in A&E. My Neurologist didn't take any feedback from me and was adamant that I should stay on it.
I'm not so sure as I'm yet to see a Parkinson's symptom. All I've been consistently complaining from the above symptoms. If I have Parkinson's symptoms they are completely obscured by my extreme reaction to levodopa.
I thought so too but recently I compared the concentration of levodopa versus time curves (attached) for Madopar (blue line) and Sinemet (red line) and I think they're very similar. So perhaps not worth experimenting with another medication.The error bars are not shown here but they are pretty big.
Concentration of levodopa versus time curve for madopar
I think finding a new neurologist might be a good idea. I reiterate what I wrote in my original comment: some neurologists don’t know the difference between symptoms and side effects of the drugs.
I would suggest that you look into the new subcutaneous pump that is available in the UK. It might allow you to have a steady flow of of levodopa at a lower level than you get when you take your pills. It’s carbidopa/levodopa rather than Madopar, but I think it would be a good option for you. I am waiting for it to be approved by the FDA and plan to try it as soon as it is available.
Yes, I am aware of the pump. I think in the UK it is approved for later stages PD patients only due to the cost involved. I shall definitely enquire! Thanks and Good luck to you!
Because if I don't take it I get a severe reaction which I can describe as a withdrawal.. The onset is so sudden that I have virtually no time to lie down. All this affects my heart and even my breathing. It is such a vicious circle and I can't get out of it without help. Unfortunately my Neurologist is not interested in helping.
If it was me, I would try changing from a Madopar 125 capsule to a double-scored Madopar 125 tablet. I would use a pill cutter to cut a tablet into 4 quarters and try a dose of three quarters of a tablet. If problem persists, I would try a dose of one half of a tablet. I am not a doctor etc. etc.
I have tried very precisely reducing the content of the capsule by 10, 15 and 25 per cent by using very fine scales. The results were impressive - 75% capsule allowed me to do push ups! However, other problems arose - one never knowns for how long the capsule will last, the end of dose is even more abrupt, and eating at such short intervals is a problem. So, no solution yet.
Hi Daisies22 . Maybe you can ask your Consultant for a long acting version of Amantadine which can be really helpful if it works for you. I have followed your posts and I have found some of my symptoms have resembled yours in part. Two weeks ago, my MDS switched me to Gocovri which I have found surprisingly quite effective as compared to Amantadine. The pharmacology seems to be different. I also have been forced to reduce my Sinemet dosage as the Gocovri starts to become more effective. . I just hope it is a sustainable relief that does not peter away as time goes by. Hopefully, the passage of time will tell.
Hi pdpatient,Thank you for the information about Amantadine. Google tells me that it is used to treat levodopa induced dyskinesia in PD patients. So, this is a medication used to treat side effect of another medication as opposed to a disease. I think this is fundamentally wrong but I am so desperate that most probably I'll be booking a telephone appointment with my Neurologist first thing tomorrow!
May I ask a question? Assuming you have dyskinesia, does it come and go, or you have it 24/7?
AndI have had severe episodes of dystonic mu scle contractions that effectively left me paralyzed. The strong contractions of my chest muscles made it virplptually impossible to breathe. I was taken to hospital wire dystonic pain. I was diagnosed with a heart attack. More studies showed that I had fractured 11 ribs but I didn't have any heart problems. I started using Duopa at low but continuous dose levels, l have been on this therapy for 12 years with little dyskinesia or dystonic episodes.
I am so sorry that such a traumatic event has happened to you.I hope I am not intruding but I was wondering if at that time you were on anti-Parkinson's medication, and if yes what was your total dose for the day.
I fluctuate between 950 and 1100 mg levodopa per day. I wish I could reduce it but for various reasons I can't achieve this.
I would be grateful for any advice you might have.
You are right to point out that Levodopa causes its own issues that need to be treated with another medication which is Amantadine. At this time, my doctor said that it is the only thing that they have to treat dyskinesia. The long acting version is called Gocovri. This generally won't be prescribed unless Amantadine has been trialed first. For me, I have found consistent and tremendous relief with Gocovri.
My dystonic dyskinesia happened after each dose, so in one way you can call it 24X7.
Thank you for your quick reply. I should perhaps say that I too have been following your posts as I always find something useful there.I hope I am not burdening you with too many questions but could I ask one last one, at least for today?
When your dyskinesia happens, are you able to move around or like me you are confined to bed and totally dependent on others? Are your muscles relaxed or tensed to a breaking point?
I am just trying to understand my symptoms as my Neurologist keeps telling me that he has never seen a case like mine. I often wonder if this is the case how he knows that what he sees is indeed PD...
Daisies22 . You are welcome to ask as many questions as you want. After all, we are here to share and learn. Happy to help.
My dystonic dyskinesia does immobilize me for about 20 minutes and it prevents me from walking. But I am not paralyzed per se. I can do some things which does not involve walking. But as I said, Gocovori/Amantadine is very helpful. I find it more tolerable now and supposedly it becomes better with time.
Thanks for your reply and for the information about Amantadine. This morning I emailed my Neurologist to enquire if it would be possible to be prescribed a few doses to see how I feel on it. No answer yet. I will let you know if I make any progress with the medication..
Usually, at least in the US, they will prescribe amantadine because it has been around a long time and is cheap. Gocovri is newer and still quite expensive.
Hi Daisies22 strange that a neurologist has nothing else to suggest, there are also other forms of madopar such as prolonged-release madopar, or c/l like melevodopa and carbidopa. which dissolves in water and works in a quarter of an hour, my madopar in divisible tablets takes about an hour to take effect and I often take it with lemon juice to acidify the stomach, I use all three forms at different times trying to keep the concentration of levodopa in the blood constant, plus b1 and nothing else.
yes they are very similar but not the same, my neurologist gave me the C/L 12.5/125 that you see in the photo with the name Sirio, for me it works well two a day maximum. Sometimes I divide it in half .
Firstly - get a new doctor! Second get yourself thoroughly checked over for any other medical issue - these side effects should not be happening to you. Are they certain you have PD? or are they too lazy to find out what you really have wrong?
Adding to your mix more Madopar is not the way to go or adding an agonist won't solve anything either as they can cause other problems like they did to my PWP - the neuro we had wouldn't listen - so we found another one and I made enough noise for him and our GP to help us get him off those drugs. Now he has 750mg per day of Madopar - 4 doses x 4.5 hours apart - he has CBD Oil at night and that is it. Huge difference to him and he is functioning well and back to himself and as happy as you can be with PD.
Please get another Neuro this person isn't interested in helping you and shouldn't be practising in mt opinion!
Thank you for your reply. I couldn't agree more, I do need a new Neurologist. However, in the UK changing consultants is virtually impossible, and this is my second one. I'm seeing him once a year, and for the last three years he has done absolutely nothing to improve my quality of life. He is not interested in feedback, certainly not mine I did enquire about the CBD oil but was told that it was not prescribed to Parkinson's patients, so no luck here. I am going to enquire about the Amantadine tomorrow.
You have done really well to reduce the daily dose of Madopar of your husband to 750 mg per day! This is really a great achievement!
An individualized dosing based on gender may be beneficial in optimizing your treatment. They found that women with PD may require lower doses of levodopa compared to men, on average about half! So women tend to have higher levodopa concentrations in their blood after taking the same dose, which may increase the risk of developing motor complications and dyskinesia.
Thank you Esperanto. Yes, I have read the paper on gender differences and levodopa absorption. I wish I have researched the topic before starting taking the medication but I trusted my doctors. I am finding it very difficult to engage them in any conversation involving Pharmacokinetic, that is why I'm trying to adjust my medication on my own using data from clinical trials.Still not found the winning combination...
You know best when something doesn't feel right with your medication, and, I can't say this officially, unfortunately, you can't always rely on your doctors for that. I hope you find the right balance in your medication. You're certainly doing everything you can! 🍀
Personally, I have turned the negative spiral into a very positive development, against the advice of my neurologist. For the first time, he has reached out to me to make an appointment this coming Wednesday because I haven't been in touch. I am curious to hear what he says about me not needing any medication at all right now...
No medication at all? I'm intrigued, may I ask how you achieved this? How much levodopa were you on per day and for how long?Hope I'm not asking too many questions.
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