My dad was taking 2 sinimets every 4 hours. It was working well until recently. He started developing on/offs. His off lasted him min 1 hr and sometimes he was off 2hours. Neurologist wanted to increase his dosages and bring them closer together. My father refused to take more sinimet. He was advised by a friend to try one mucuna instead of a sinimet dose. We ordered from British supplemts and he had an immediate change for the good. He was more energetic and alert and his ON lasted him 4 hours and more. He was so excited that slowly over weeks we started changing 2sinimets to 1/5 sinimet with one mucuna by each dose.
His problem of ON/OFF is gone but now he started developing dyskenesia. Is he overdosing on dophamine? Everyone seems to me talking about mucuna powder online. This is capsule and is 357mg of 99% ldopa. Is that not too much. Its like 3.5 sinimets each time. I need help. My mum is doing this exexperiment and im nervous,
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lisa103
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He is of course over dosing. His two capsules of Sinemet probably carried 200mg of L-Dopa, while this one capsule of British Supplements carry 375 mg of L-Dopa.
It is a very dangerous mix if you do not understand the different pharmacology of each substance.
I would revert to what he was on: 2 Sinemet every 4 hours.
Hopefully some here would guide you, but even then it is tricky. You need to undertand a lot to pull this off! If you don’t it is safer to stay with the recommended course of treatment 🌹
Sorry but why would you recommend going back to a regime which does not appear to help over one where they feel so much better and symptoms improve! 'My father refused to take more sinimet. and he had an immediate change for the good. He was more energetic and alert and his ON lasted him 4 hours and more.🤷♀️
I recommend going back, because it is the base line from which you can try again when you better understand - from comments here and your own research - how to mix a pharmaceutical and a supplement.
Trust me, you can not only use British Supplements Capsules, because it in no way provides any help to prevent the cannibalization of L-Dopa outside the brain. You will need to use at least green tea capsules which inhibit the dopamine degrading enzyme COMT or a weak MAO-B inhibitor like Quercetin to match the efficacy of Sinemet.
I understand he does not want to take more Sinemet, but there maybe other pharmacological solutions that the doctor may suggest.
You can start here with a link to the Parkinson.org library - Motor Fluctuations
It seems right to be nervous. The problem was that there was no minimum amount of levodopa present and overdose 'solved' that. The neurologist's advice was probably correct, although given the recent onset of dyskinesia, I would limit myself to a smaller interval between doses and not necessarily a larger dose, perhaps even less at a time.
What was his initial amount per intake what type of Sinemet (IR or ER) and at what times?
Sinemet Plus 25/100 is Immediate release though. It's interesting that he is expecting for it to last 4 hours, so it makes sense to me that he would have large 'off' times. Would it not be worth trying to take 1 x 25/100 Plus IR and 1 x 25/100 Plus Retard ER. My hubby takes every 4 hours as well - Sinemet 50/200 ER x 2.5 and Sinemet Plus 25/100 IR x 1 every 4 hours - it keeps him level with on/offs. It's like he needs an extender instead of 2 x quick release. Just my thought. All the best.
Normally that would be a good option to get a more even buildup. You will probably solve the dyskenesia troubles with this, but the previous problem remains. From the description that there were sometimes 2 hours off periods, you can calculate that the minimum plasma value must be at least 50% higher than with the original medication. Let's assume that the dyskinesia is caused by the extra Mucuna, then the maximum plasma value should remain lower or the same. Unfortunately, that higher minimum plasma value is not possible with a combination of IR and ER, without further increasing the dosage.
With only IR and smaller intervals, that works and the daily total C/L intake can even remain the same.
Thanks Esperanto - love learning from these posts. Especially how things work like half life and plasma values.... way above my head until someone like yourself explains. THANKS !! 🙂
Hi I am taking British supplements Mucuna and like it. I am 78 and diagnosed nearly 4 years ago. Started on Madopar 12.5/50 (this uk Sinimet). 3 times a day then early this year ON time was less and less so took Madopar every 3 hours but still low dose. Didn’t like this so researched Mucuna and found BS. Decided to substitute my early evening dose with Mucuna and it really helps me sleep much longer. They have just started a half dose capsule so you could substitute one Sinimet with one half dose Mucuna and trial it. Please let me know how you get on
Do you take the strong mucuna or half dose. My mum ordered the half and its arriving any day. Would it be ok if he changed every dose for a mucuna with half sinimet? He tried recently biovea mucuna 250 but it only lasted him 2 hours. I hope the half BS capsule will help.
I take the strong one but only once a day. I am considering substituting another Madopar with the half dose but I have learnt to make ANY changes very slowly and monitor daily My suggesting would be make one substitution and stick with it for at least two weeks then if it’s working substitute another and so on. If you change too much all at once you never know what worked and what caused a problem. We want a quick success but Parkinson’s doesn’t allow quick success it’s slow trial and error.
Your so right. My mum was so finished with my dads off episodes that she rushed into changing all doses. Now they forget when he is due for his next medimedication because he is busy at work for long stretches. His boxing seesions and weight lifting have become more powerful. Overall he is stronger and happier. The dyskinesia only started last week. His legs and arms started swinging.
have you tried the half dose? Does it have same effect?
I haven’t tried it yet because I’m fairly stable and I don’t want to rock the boat. I have made an app for August to see a top MDS privately because here in the U.K. there is a 53 week waiting list on the NHS so I want a steady record of what I’m taking when I see him.
We tend to think of mucuna solely for use with Parkinson’s,but it’s used for a wide variety of problems.British Supplements make two strengths,and your father is on the mega dose which is only advised as a one a day capsule .If you look up their site you can read loads of reviews from folks that are using it for other purposes.My husband takes one of the lower dose capsules once a day along with 1/2 sinemet to boost him in the afternoons,but I wouldn’t dare have given him the high strength capsule
So glad you posted this. I'm experiencing the same thing and now, thanks to you, I think I know why. You've helped me understand the mucuna-induced problems which for me are significantly increased tremor, anxiety when speaking to someone, jitteriness, spasms in hands and feet (new for me) etc. I'm taking the BS ( 237.6mg L-Dopa per cap) Mucuna product but will now revert, as Caseyinsights suggests, to Sinemet. Could someone also please give their view re GABA? Thanks. This is the quakiest I've ever been since diagnosis a year ago. I - hopefully mistakenly - feared it was rapid progression. Have taken hope from you guys' shared info that it could be OD. Phew, alrighty then! (Still very befuddled re the B1 and Mucuna approach).
I have a question; where do the chemists get the dopamine for the Sinemet tablets. A follow up question would be; once the chemists decompose the Mucuna to make the tablets sold in markets, is this not just a medication that doesn’t have to be regulated? Dyskinesia’s, I believe, are what everyone is fearful of getting from the prescribed meds. OD on dopamine causes the dyskinesia, so the source doesn’t really matter?
I respect all beliefs and I know how confusing this disease is. I know there are a million variables, some we have never considered, so not one of us has the answer, yet. I hope your father lands on the perfect dose that works for him. As people progress doses may increase, such a trial and error convoluted problem added to all the other unknowns.
Levodopa medication is strictly for symptom relief. No matter how much analysis you do, in the end, the best regimen is determined empirically. Dyskinesia is due to too much levodopa. Since what he is doing now is better than what he had before, rather than make any radical changes, I suggest to gradually cut back on the levodopa until the dyskinesia is resolved.
The problem here is that in addition to reducing the peaks in the dosage, you also need to ensure a higher base of levodopa in connection with the off periods. That is why it is not only a matter of experimenting with the amount, but especially with a (shorter) interval between doses.
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