Another experiment


#1

Hi,

I've been on Madopar since the end of June. Started on 62.5mg. and gradually increased to 125mg. three times a day. My 'on' period was lasting 4hrs. hours, but recently down to 3hrs. The PD nurse suggested increasing the dosage to four times a day. Before doing that, I thought I'd try another experiment with Mucuna Pruriens. So when I was beginning to feel 'off', I decided to have a dose of Mucuna to boost dopamine and it seems to work. This delays having to take Madopar again so soon. We'll see what happens over the next few weeks. I really want to keep the Madopar dosage to a minimum if poss., so that in years to come, it will still be effective. With my previous experiment, taking Mucuna Pruriens only, I found the powdered form better than the tablets or capsules. It still didn't work terribly effectively, but taken alongside Madopar, it seems to work just fine.

Has anyone else tried combining natural Levodopa with synthetic? I'd be very interested to know.

Twinks.

 

 


#2

Hi Twinks

Interesting. . .

how long does it take for the Mucuna to kick in when you take it?

My Madopar hardly lasts 3 hours, even with Entacapone, and I go off so fast these days, from feeling vaguely normal to being unable to move at all,  in the space of about 5 minutes. Often resort to taking a dispersible Madopar to get me moving again, takes about  15 mins, than the usual dose about 45 to 60 mins later. Would love to replace dispersible with Mucuna if that would do same thing.

S


#3

Hi Supa,   Sorry to hear your meds. aren't lasting long theses days. I only started this experiment a couple of days ago, but the Mucuna kicks in after 10 - 15mins. and lasts nearly 4hrs., so effectively I don't need an extra dose of Madopar. I take the Mucuna powder on an empty stomach, mixed into a small glass of milk. How long have you had PD and been on Madopar? It's still fairly early days for me (4yrs.) and symptoms seem to be progressing slowly. I have no tremor.

 

Twinks.


#4

Hi Twinks

Sorry, I missed your response!

I was diagnosed in spring 2014, and started Madopar then,  so only about  2 and a half years ago, following about 9 months of increasing symptoms with my walking. Or rather, not walking - gait initiation after freezing being my biggest problem.  No tremor. To me there seems to have been a very fast deterioration in my condition. I want to avoid adding any more Madopar so would like to try the Mucuna powder. Where do you source it?  Send PM if details are not allowed on forum.

S


#5

Hi Supa,

I've bought from 2 different suppliers in the past. Mountain Fresh Health Foods and Spirit-Scents xyz......both on eBay.


#6

Hi,

In terms of research, there has been extremely limited research into the effectiveness and safety of mucuna pruriens.

We would encourage anyone who is thinking about trying mucuna puriens to speak to their specialist or Parkinson’s nurse. As mucuna provides a natural source of levodopa, this can interfere with Parkinson's medications.

We also urge people to be cautious when buying supplements over the Internet and be aware that they are not subjected to the same careful safety testing and monitoring as approved medical treatments.

Best wishes,

Joanne - Digital team. 


#7

Hi Joanne,

Thank you for your cautionary words. I think we all know how careful we have to be when buying off the Internet. And of course everyone should consult with their GP or specialist, before trying any supplements. I certainly did.

It's so difficult for people who DON'T suffer with Parkinson's, to understand how desperate we are for anything that will help us. NO-ONE can fully understand what we go through and the frustrations caused by the drugs companies ruling what meds. we can take and what meds., we can't.

For instance, why has there been so little research into Mucuna Pruriens and it's benefits for Parkinson's? After all, they have been using it in India for centuries. It is a natural form of Levodopa......oh, I suppose I have just answered my own question. There's nothing in it for the drug industry!!

Twinks.


#8

Twinks,

Why don't you try 62.5 six times a day, same dose as 125 three times a day,  but the more frequent dosage may lessen your off periods as you won't experience the big troughs and peaks of Madopar not being effective for as long as you need it to be.

Suggesting this as my OH tried this first, before increasing their dose, at the suggestion of the consultant.


#9

Hi Benji,

Thanks for your suggestion.......a good idea. The only drawback is the timing of taking the meds. 6 times a day, as I always take them at least half an hour before food, or an hour after I've  eaten, so they have maximum effect. Hope this approach is working for your OH though. Will now get pen & paper to work out a daily routine to fit 6 doses in around my food intake!!

Twinks.


#10

Hi Twinks

Thanks for the sources. I do intend ordering a small amount to try, probably from M F H F  as SS XYZ don't list it currently.

How much do you take as one dose?

Thanks for help

S


#11

Hi Benji

i have tried your "smaller more frequent" regime. It did work in that the worst of off times are eliminated, but I found it was really difficult to fit in between meal times. This was partly because I need five doses of 100/25mg Madopar a day, at no more than 3 hourly intervals, so fitting in 10 doses of 50/12.5mg  at 90 minute intervals became really intrusive and complicated. In the end I reverted to my previous regime.

But it is a good idea, always worth a try, everybody is different!

S


#12
I'm not really sure pd tablets work better on empty stomach, all there saying is do not take when eating protein foos as the tablets will have to fight there way through i take mine every 2hrs 8am breakfast 9.30 tablet 10 am so on .its allways better to try some changes.

#13

Hi Joanne M

To add to Twinks' response -

When I was first diagnosed I has told that while there was no cure, there were many drugs that would  help my symptoms. My consultant also told me I was " my own guinea pig"

Little did I realise that this actually meant that NONE of the prescription drugs available would work well enough for me to EVER forget that I have  PD.

In the course of a day I take 5 doses of Madopar. This means that every three hours I am Off for about an hour, which means 5 hours of every day I am completely unable to function. Between,  in the On times, I have to remember to move very carefully when standing, turning  etc to avoid falling and I freeze at every doorway etc which ( haven't counted) must be at least 50 times a day! I have tried 5 or 6 other prescribed add-on drugs which could possibly help, but in all cases the side effects were intolerable.

EVERY DAY this gets a bit much ! That is with so called safe trialled prescription drugs.

So, I have no choice but to try any alternative remedies. They cannot have a worse record of side effects and there is as good a chance of them helping. The cost is a drop in the ocean compared to what I pay out weekly for assistance with household tasks that I can no longer do, and having had to buy a mobility scooter to get around shops safely.

All I want is some of my life back!

S


#14

Whilst on the subject of supplements, You have of course  to be careful of interractions.  e.g. I came across this where B6 is said to lessen the effectiveness of levadopoe.  This despite the fact that elsewhere it is said that B6 protects from developing PD  A bit of  minefield.
http://umm.edu/health/medical/altmed/supplement-interaction/possible-interactions-with-vitamin-b6-pyridoxine
Whilst here, I hope everyone knows that calcium interferes with a number of meds, e.g. thyroxin for under-active thyroid which is fairly common in females

Regarding, macuna pruriens, a prominent neuro in UK has written a positive article  drawing together research and recommending it for PWP's who have not had luck with more conventional treatment. but I cant for the moment find the reference..

 


#15
Hi supa have you tried sinemet yet

#16

Hi Eileenpatricia

i found the following supportive research - 

Copied from

http://umm.edu/health/medical/altmed/condition/parkinsons-disease

Cowhage (Mucuna pruriens). This herb contains levodopa. In one small study, it worked better than the form of levodopa given as prescription medication. Doses ranged from 22.5 to 67.5 g per day, divided in 2 to 5 doses. More studies are needed. Cowhage can interact with other medications, including those taken for diabetes, antidepressants called MAOIs, and antipsychotics. It can also lower blood pressure. If you take medication for high blood pressure, you run the risk of your blood pressure dropping too low. DO NOT take cowhage without your doctor's supervision, especially if you already take levodopa.

Supporting reference -

Katzenschlager R, Evans A, Manson A, et al. Mucuna pruriens in Parkinson's disease: a double blind clinical and pharmacological study. J Neurol Neurosurg Psychiatry. 2004;75:1672-77

Abstract
The seed powder of the leguminous plant, Mucuna pruriens has long been used in traditional Ayurvedic Indian medicine for diseases including parkinsonism. We have assessed the clinical effects and levodopa (L-dopa) pharmacokinetics following two different doses of mucuna preparation and compared them with standard L-dopa/carbidopa (LD/CD). Eight Parkinson's disease patients with a short duration L-dopa response and on period dyskinesias completed a randomised, controlled, double blind crossover trial. Patients were challenged with single doses of 200/50 mg LD/CD, and 15 and 30 g of mucuna preparation in randomised order at weekly intervals. L-dopa pharmacokinetics were determined, and Unified Parkinson's Disease Rating Scale and tapping speed were obtained at baseline and repeatedly during the 4 h following drug ingestion. Dyskinesias were assessed using modified AIMS and Goetz scales. Compared with standard LD/CD, the 30 g mucuna preparation led to a considerably faster onset of effect (34.6 v 68.5 min; p = 0.021), reflected in shorter latencies to peak L-dopa plasma concentrations. Mean on time was 21.9% (37 min) longer with 30 g mucuna than with LD/CD (p = 0.021); peak L-dopa plasma concentrations were 110% higher and the area under the plasma concentration v time curve (area under curve) was 165.3% larger (p = 0.012). No significant differences in dyskinesias or tolerability occurred. The rapid onset of action and longer on time without concomitant increase in dyskinesias on mucuna seed powder formulation suggest that this natural source of L-dopa might possess advantages over conventional L-dopa preparations in the long term management of PD. Assessment of long term efficacy and tolerability in a randomised, controlled study is warranted.

Have not found UK research yet!

 

S

 

 


#17

Hi Supa,

Yes, I too have read all the above info about Mucuna Pruriens, so why is it not been followed up? It makes me so mad that something that obviously has great benefits to our condition, is poo pooed by the majority of scientists and researchers. As you say, we are virtually forced into trying remedies for ourselves.

I'm so sorry that you are finding conventional meds.not working properly for you. Madopar seems to make me feel better, but it still doesn't let me forget that I have Parkinson's. When I add the Mucuna to my regime, I only have a small amount.....you get a tiny scoop, in with the powder and I use that as a measure. I'm going to experiment a bit more with different amounts and keep the Madopar to a low dose.

What I would really like to try is medicinal cannabis, but of course THAT'S not legally an option in this country either!!!! No wonder we despair sometimes.......

Twinks.


#18

"  The research into the etiology of these phenomena has identified the causative agent of the irreversible dyskinesias as carbidopa, not l-dopa"


The above is from from the following report

http://europepmc.org/articles/PMC4238750http://europepmc.org/articles/PMC4238750


May shed light on  why some do not react as hoped to  the combined carbidopa/levadopa meds.

 


#19

Hi Twinks

I have got the Mucuna on order now, so in a week or so hope to have some good news to report.

Not sure what cannabis would do to help my symptoms ( apart from relaxation) although it seems to be good at alleviating tremors. But I noticed that Amazon actually has several sellers of various hemp ingredients to make CBD tea, which could be a good option. "Wikihow" has excellent instructions on how to make it.

S


#20

Eileenpatricia,

You are always spot on with your research. 

Thanks for that! 

S