I was wondering if PwP who have used Levodopa long term and in high doses have ever experienced withdrawal symptoms when tapering or stopping the treatment with Levodopa (L/C or Levodopa/Benzarazide).If you have, I would be grateful if you could describe the withdrawal symptoms you have had, and how you managed them.
I've been trying to gradually reduce my daily dose of Levodopa from 950 mg per day to about 800 mg but I can't say that I have been very successful at all. Any advice will be appreciated.
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Daisies22
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Yes I have tried a few times and it was very difficult without active doctor involvement and time off from work. In fact it's difficult in both directions - up and down. It will take a few weeks.
Thanks for your reply! Though, you didn't tell me the most important part - what was the Dr's involvement, and how did you manage to reduce the total dose? Is there a protocol?Thanks!
It's an individually tailored titration up or down. For me, I was told to reduce the dosage by 20% every 10 days. Same thing when I wanted to titrate up.
How far apart are the doses - to reduce my husband we increased the time between doses. He used to be 3 hourly and we are out to 4.5 hours now and he is fine.
I take in total seven 100/25 capsules Madopar Immediate release during the day - one capsule every 2h 45 min. I have tried gradually increasing the time between the doses, I've also tried reducing the content of the capsules by 10%, 15% and 25%. Whatever I do I get adverse events which I could only describe as withdrawal episodes. They are very intense, my muscles from head to toe contract but don't relax for hours at a time, blood pressure and pulse rate increase to the point that we had to call an ambulance.
I do not understand why it should be so difficult to take medication. Forgot to mention that only recently we found out that the Levodopa is most certainly the reason for the serious adverse events I'm having every time I take Madopar. We thought it was the Dopamine agonist I was on until about six months ago.
As I'm only on Madopar now and all this is happening when I take it, the only logical conclusion is that the Madopar is responsible for the horrendous episodes I have during the day.
My hope was that if I manage to increase the time between the individual doses things would improve. Unfortunately, I have not been successful in finding a way to achieve this.
I was diagnosed nearly six years ago at the age of 49.
Any information or advice you might have on how you achieved dosing at 4.5 h would be greatly appreciated.
I will reply to you with more in depth info tomorrow - it does sound as if you are having drop off and your actual dose could be the problem. Until tomorrow.
Hi I am back. Just to let you know Sinemet has Levodopa as well the only difference is Madopar has Levo + Benserzide - Sinemet has Levo + carbidopa. The benser and carbid in these caps are helpers for the Levo. What I am having trouble with is why they have you taking it at 2.45 hours apart all day - as your day goes on it would be accumulating. You haven't said which agonist you were on or how you came off it. Now we all know that no 2 pwp are the same and I am not going to tell you what you should do - apart from pinning your neuro down and making them more involved and informative. They don't like it much but this is your life and health he/she must not only listen to you they must HEAR you - at the end of the day you are the expert ( you have the disease) they are ( hopefully expert in the drugs available) From what you are describing it appears you are getting too much with the dosing the way it is currently. I will give you some background on my pwp.
Kev was formally diagnosed in 2016 - he had been showing signs for 7 yrs prior but his GP wouldn't listen to me. We had a very good neuro and he put him on Madopar 100/25 x 3 hourly. We saw him again in 6 months and after going over him again and listening to what I had observed he added another 50/12.5. He told me to watch him and if I thought he could do with less to adjust the time between doses - which I did do after 6 weeks to 3.5 hours. Unfortunately we lost him to cancer a year later and had to get a new neuro - he was not a listener and he insisted he take an agonist - Sifrol/ Simipex SR( pramipexole) .75 in late 2017. Over time Kev ended up with cluster headaches and Parinson's appeared to be advancing - falls, drunken gait, stuttering, couldn't pick his feet up, in a lot of pain, bad dyskinesia, hands and feet spasms and hands clawing and feet twisting - couldn't walk some days. I the meantime I did deep research on this drug and how he was put on it by this guy - I told him I wanted him off it and he told me to give it time - huh he had been on it for over 4 yrs. I found a GP for him who could prescribe him medical CBD - wow the improvement in him was tremendous and he is still taking it every day. The new GP did not like Sifrol - nor did the new Neuro - he put him on Entacapone to help with the Sifrol as he wasn't sure how to get him off it - it is not a drug you can just stop and it causes a lot of pain amongst other things. So I went to work on our neuro - talked to our GP and nutted out a plan, neuro prescribed rapids of .25 pramipexole x 2 per day - it was slow and not nice but over 8 weeks we got him off it and then dropped the Entacapone. He was a new man - all the problems and advancing signs were gone - back to where he was before he started that drug. Then we played with Madopar - took him out to 4 hourly and then out to 4.5 hourly - which meant we dropped a dose everyday - down from 5 x day to 4 x day. He still takes CBD oil at night only now - when he was on Sifrol he could not sleep - now he sleeps 6-8 hours most nights and the aggression, impatience and hissy fits are gone - he is himself again. A so called friend said to me "you should leave him" about 8 months ago - I said "well if you are happy to throw almost 35 years of marriage - I am not" - poor form to say that when you know why he was like that and could not control how he was - needless they are no longer a friend! People who know us can't believe it - Kev is back!
Perhaps you need more per dose of Madopar with less doses thru the day. What you are describing could be "drop off" - could be getting too much too quickly with the dosage rate. Please talk to you neuro and make them hear you - try to describe what is happening to you that will make them sit up and listen - ask the questions about your dosage rate and strength of your caps. It is all trial and error with these meds and playing with it sometimes is the only way forward.
Do you take a Vit B Complex? I have found Magnesium and B Complex helpful when you are getting stressed over what is happening - be careful of how much B6 is in the tablets as the makers put too much in them. We are in Australia so I am unsure of what you have available where you are - I have found one that only has 5 mg of B6 and it is not causing any problems - too much B6 can cause peripheral neuropathy and that is painful. Hope I have been able to give you food for thought - I hear you - it is a stressful disease but you can give it a smack over the ears if you have good medicos, partner and family to work with you - kind thoughts - Carole
Thank you so much for your messages! Wow, what a story! Yes, you have given me not only food for thought, you have given me hope that I can get back to what I was prior to my diagnosis.
I am very familiar with the Pramipexole, I was prescribed it plus Madopar when I was diagnosed and was on it for a year without any beneficial effects for me. Later my Neurologist replaced it with NeuPro transdermal patches which are even worse in my experience. The dose I was prescribed was 10 mg which was unbearable. I stayed on it for a year and started gradually reducing the dose. It has taken me nearly four years to get from 10 mg to just under 0.7 mg! I still have not found a way to completely eliminate this medication due to the horrendous withdrawal symptoms (mainly cardiac and motor) I get.
Reducing the dosage of Madopar proves equally difficult. Not having an understanding Neurologist to work with is not helping either.
I am really grateful for taking the time to write to me! I'm going to make an appointment with my GP today and discuss my options about getting a prescription for CBD oil.
Just one last question - what strength is the CBD oil your husband is on? Hopefully it is available here in the UK.
Thank you again. We have never met but I can honestly say that I'm so happy for you and your husband, and the remarkable recovery he has made thanks to you. What an inspiration!
When he first started he got it in 10 ml dropper bottles - now we get it in 30ml dropper bottle and it is actually cheaper now. Your GP can Google it and can read about it on tga.gov.au - they approve all drugs for use in Australia - CBD is an approved drug here - not sure of UK rules but your GP should know ( script only from approved medical practitioner)
Hop you are able to have it as it does help and it relaxes you and helps with sleep and pain - some people have reduced tremors - Kev's come and go and he says they don't bother unless he is trying to do something fiddly - lol
I just realised that I've managed to somehow miss this post. I will try to reply later tonight.
I was on NeuPro transdermal patches. Initial dose 6 mg per 24 h, in 4 months I got to 10 mg and really bad things started happening.
It took me 3.5 years to very gradually reduce the dose to about 0.7 mg, which is still a problem.. But on almost no Dopamine agonist I feel orders of magnitude better!
I could just say that the whole experience was horrendous.
My husband is on madapar and wants to reduce and come off it due to side effects and Parkinsons nurse said cut 1 pill out (he has 2 at 9am and she said he can cut one out, then he has 1 at 1pm, 1 at 4pm and 1 at 6pm (100mg each pill) Cutting the 1 out made side effects improve (he was having dizziness which made him stare, shake and fall over) but his walking got worse. He's also slightly low in iron (a side effect on the leaflet of Madapar) and has low blood pressure, slow pulse and heartrate and underpar kidney function. (of which all are on side effects apart from the kidney function) He found his walking got a lot worse without that 1 pill, shuffling in house, ending up on his toes and falling forward onto his knees many times a day. Nurse then gave him half a pill to add back to morning and he's even worse. When I say I'm worried about what they're doing to him, she said all drugs have side effects. I know they're dangerous to stop cold turkey as that can kill you so it's difficult and frightning to get off them. I have now ordered some homeopathic remedies that are meant to help and they are safe to take with the drugs so I hope they will improve things. He bought macudopa (natural form) but has been nervous to try it although it says you can take with the drug to top it up or use it to wean off drug gradually.
About 5 - 6 yrs ago I was taking about 1100 - 1300 mg of C/L because of a stressful situation I was going through. My symptoms were uncontrollable tremors in nearly every part of my body especially arms and legs and my muscles. I also was paranoid about leaving the house or even talking to anyone. Luckily I have 2 good friends and a husband that helped me night and day to slowly come out of it. They had to rub my arms and legs for hours to relax them. I lost about 15 pds. I walked backwards a few times. I think I had some bad dreams and would say mean things.
I finally got back on track by tirating down on my medicine 1@ a time until I got down to 700 mg. It was very tough though. My helpers had to keep me on a tough schedule of 1 C/L every 4 hours. They wouldn’t give it to me 1 minute early. They had to take me to a counselor and she basically said go back to church and back to Rock Steady Boxing. It took about 2 months but I finally got back to “normal “.
I was able to taper down on Sinemet with the addition of Rytary (time released) by my neurologist, and citicoline (big help) on my own 600 mg a day.
I tapered gradually 1/2 tab at a time of the Sinemet. I was taking a total of over 900 mg of Levodopa a day and now taking 700 mg a day in total.
I now take 1/2 of 100/25 Sinemet with 1 - 145mg Rytary - 3 times a day starting at 8 am (every 3 hours till 2pm). Then at 5pm I take 1 1/2 sinement (no rytary) and at bedtime 1 full Sinemet. I may wake a take another 1/2 or 1 full sinemet as it helps me sleep. This was working with my neurologist to help me reduce levodopa usage and assist with dyskinesia. However, when I started Citicoline, it stopped my dyskinesia before I started reducing levodopa. One of the lucky ones I guess 🙏
Thank you for this information. I have terrible whole-body shaking, a form of dyskinesia I guess. I only get it when I take Madopar Immediate release during the day. I have no explanation for this phenomenon. I have occasionally taken it during the night if the Madopar Control release for some reason hadn't worked but I have never experienced whole-body shaking caused by it at night. I have not heard of Citicoline! I'm intrigued. Are you still taking it, and does it still suppress your dyskinesia?
Yes, I'm definitely still taking it and it is preventing dyskinesia. Not so much as suppressing it, but like it's just gone. I take 300 mg of cdp choline. I get it from Amazon. Fairly cheap. And easy to find.
I cannot pretend having an experience, because I am just trying.
Like you, I am starting from 5 x 200 mg (Modopar) per day.
What I seem to have discovered is that Levodopa is much more efficient during sleeping time and including approx. 1 hour after wake-up.
So what I am experiencing now is :
1) one 200 mg Modopar at night, just before going to bed
2) one 200 mg Modopar when I wake up at night (usually 5 to 6 hours after going to bed, and then I try to sleep again, and it usually works after laying done idle for 1/2 hour to one hour
3) one 200 mg Modopar when I go for a midday nap (siesta !) - usually one hour after lunch time.
And that's all!
i.e. I am reducing from 5 x 200 mg a day to 3 x 200 mg a day.
As said, I am just experimenting. But, for the time being, I am quite satisfied. I am not suffering any unwanted side effect.
Better not to take levodopa if your body does not require it. Typically, there are no withdrawal symptoms in such instances. If you do experience withdrawal symptoms, it is likely that you need the medication to manage your PD symptoms. In that case, I would advise against reducing the dosage unless you encounter unpleasant side effects. It is crucial to manage your medication by dosing it appropriately. I recommend consulting first the levodopa Bible for guidance. 🙏
J. Eric Ahlskog in 'Common Myths and Misconceptions That Sidetrack Parkinson Disease Treatment, to the Detriment of Patients'.
Thank you, Esperanto!I am aware of the existence of the "Levodopa Bible", it's just that I have not had time to have a closer look at it. Hopefully, I will be able to find answers to my questions there.
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