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Going it alone.

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Twinks

Well, after all my protestations about conventional meds. and completing a 6 month experiment with Mucuna Pruriens, (natural Levadopa), I have finally succumbed!!

Now taking Madopar and 10mg. Selegiline and have to say, I feel absolutely great! Gradually increasing the dose to 6 capsules of Madopar a day, (300mg.) 

How long will this state of affairs last, I ask myself? I suppose the answer is, 'how long is a piece of string?' Do others on Madopar manage well and what happens after 5yrs. when it starts to have less effect? I'm a lively 67yr. old at the moment and reckon by the time I'm 72, there'll still be live in the old ***** yet!!

Twinks.

Tabbycat

Thanks for reminding me, Kev

Green lipped mussel extract is fantastic for joint pain. My OH takes it when his arthritis is particularly bad, but I'd forgotten about it. 

I've just changed meds and I'm having terrible joint pain during the night and, like you, first thing in the morning so I'm going to try this for a couple of weeks.

Tabbycat

Let us know how you get on, Kev.

I took one yesterday and another this morning and I'm sure I'm feeling a little better already. 

bettyblue

Hi Twinks I am on Madopor 10 tablets per day at 62.5 mg when i first started them the dosage would last 4hrs i year later 3.5 hrs another year later 3 hrs an so on and so on. Now they have added Entacpone to my mix on a really really good day i can get 6.5 hrs out of one dose Entacpone lengthens the life of the Madopar. So Just see how you go my lovely.

 

BB xxx

LEXI255

Just read your post BB. HOw are you doing? 

Kate

Hi Twinks,

increasing to 6 capsules of Madopar (300mg), so I presume these are 62,5 mg capsules, each containing 50 mg of levodopa + 12,5 mg benserazide. How much are you  on now? Why increasing if you feel great? I know that the recommendation is 3 times 125 mg a day as starter dosiis. This is because you need at least 70 mg of benserazide a day  for optimum absorption. I wanted to start really low and increase really slow (following the "go low, go slow" rule) and started on 3 times a day 62,5 mg Sinemet (= 50mgr levodopa + 12,5 mg carbidopa per tablet), even though the recommendation was double the dose to get the benefit of the carbidopa contents (in your case with Madopar this would be the Benserazide)

The low dose did work for almost a year., I increased then with adding 0ne tablet first, making the total levodopa intake 200 mg/day.in 4 doses..

Now , after 15 years of taking a DA (Mirapexin) plus ten years on Sinemet  I have now arrived at the more difficult times PD throws at most of us, with occasional freezing and unreliable "on" times. 

And, I am now 72!  When The pills work, I feel 100% and can be lively, energetiic.No-one can predict how long you will be doing well, or when, if ever, you will  start getting dyskinesia.. You might have ten good years ahead of you, you might even become a sprightly 82yearv old. Good luck! Kate

Twinks

Thanks for everyone's input....am gradually adjusting dosage. Now taking 300mg. Madopar in 3 separate doses, as prescribed. ( Yes Kate, they're the 50mg/12.5mg. capsules). Staying lower didn't make me feel great all the time, although some days were better than others. And yes, BB, they seem to be effective for 4hrs., so I tend to take them at 8am., 12 noon and 4pm. and eat half an hour to a hour later, so the dopamine gets to my brain and starts working. Just have to see how long this continues to help. That's the trouble with PD, we all react differently to the meds., so no-one can tell you exactly how you're going to respond. Good to hear other people's thoughts though......much appreciated.

Twinks.

Billywhizz

My wife is on sinemet it has stopped a shake she had in her right hand and a inner tremor she had. Her biggest problem for a very long time now has been tiredness everything she does is such a chore. Does any one know of any medication that can help her ?

                       Taa Billy

Twinks

Hi Billywhizz,

How long has your wife been on Sinemet and what dose is she taking? I seem to be less tired and have more energy, since going on the Madopar. Perhaps a change of meds. might be the answer. My biggest problem is back pain. Mind you, I'm nearly 6' tall, so everything I do, involves bending over.......washing up, brushing teeth, cleaning the house etc. Still get tired sometimes. Have a word with her neuro or PD nurse.

Hope she can get some help.

Twinks.

Billywhizz

Thanks for your reply Twinks, my wife takes 125mgs 4 times a day. She is seeing her consultant on the 2nd August, maybe a change of meds may help.

                          Billy

 

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