I have had PD for 3 years and treated quite successfully with Pramipexole and Azilect until now when the meds are not working very well. My neurologist has put me on a low dose Levadopa. I am quite concerned about this drug as I think I have read that once the symptoms return that there is no other meds to try.iIs that right and can anyone tell me what their experiences are of the drug, good or bad.
don't worry - its probably about average that someone is on DAs for about 3 years then get LD added. DAs only help some neurons whereas LD is the natural precursor of dopamine and helps all dopamine neurons - so it has a wider effect - DAs tend to mainly help movement and nothing else. There are other treatments after LD but with a bit if luck it will see you through for many years, probably in combination with your existing drugs.
It acts very quickly but only lasts for a few hours but is very noticeable.
Its best on an empty stomach for most people with a large glass of water.
Thanks turnip for the message of encouragement. I was very worried about starting the drug as I thought it was a downward stretch from now on but reading your reply I feel heaps better. Thanks once again.
My experience is similar with DA first of all and LD after about another 3 years. But I find the timing of taking LD is still a challenge. Empty stomach - yes and possibly with carbohydrates but definitely not with protein of blue cheese.
I find that I may get lucky and the LD kicks in after about 1.5 hours and lasts for a few hours (but depends on level of activity during that time). But on a bad day the LD does not kick in - not very pleasant.
I have read that LD is only effective for a number of years but cannot find any definitive advise on this. Possibly it goes back to the early days of LD when you were encouraged to take LD as and when you thought you needed LD - the smarties syndrome if you like.
There are also different tablets giving the same dosage - Madopar / Stelevo for example which may be a factor in the daily fluctuations but again I cannot find anything definitive
My consultant is gradually increasing the dose of LD as time goes on and this does have some effect.
i don't think there is any proof that you have a fixed number of years on LD - ie that if you delay it it becomes ineffective later. The alternative view is that it becomes less effective as the number of neurons decreases that can convert LD to dopamine. I dont think there is any definite proof either way though i am inclined towards the second view.
dear turnip you seem very knowledgeable,iwas diagnosed 2 years ago been on madopar for 4 days ,been told to take 1 a day for a week ,then to up the dose to 2 a day,please tell me how long it takes to make a difference,and is it very important to take at exactly the same time every day.if you notice things have improved do you stay on that dose,im so impatient im 54 ,love my bodybuilding,just was expecting so much ,please give me hope,many thanks ,would apprieciate anyone helping
i have found with madopar that there is a level where it suddenly starts working. that level varies from person to person and changes over time. after 6 years i find i need 150mg 7 times per day.
its best to be regular, but your body becomes a good alarm clock, if things are at 80% normal then thats a good level to stick at.
weight training and pd are a problem. the lack of dopamine causes the flexor muscles eg the biceps to be more stimulated than the extensor muscles. I find that using anything but the smallest weight causes pulled muscles. I would make sure you are at you max dose of meds when you go to the gym, irresponsible people, ie not me. might even suggest you take an extra half dose before a workout to avoid injury. you might want to consider lower weights done slowly and LOTS of stretches before, after and DURING.
As always Turnip is spot on,I would strongly advise caution when in the gym, I go once a week and If I stretch, fatal, the muscles in my legs attempt to tear themselves apart,I cannot describe the pain, also wifit I have been taking Madopar with a variety of other drugs since 99 and I am still taking it to good effect, it runs as back up to Duodopa which is just another description of Dopamine delivery.
Kind Regards FED
I am very interested in the question of when to start levodopa - I am 56 and my Nero suggested starting on levodopa as ragisiline didn't do anything and one dopamine agonist made me feel very ill with no benefit,. Another Nero then warned against starting on levodopa as too young, so I am now on 10mg of requip xl but don't really think it is doing much -I have flashes of walking okay very rarely, but they only last a few minutes and my forearms, hands, feet and even my stomach cramps on occasion. I know that I will soon be offered sine met again, but am worried about dyskinesia and the 'last resort' scenario that has previously been mentioned.
turnip many thanks is it wise to say take 150mg madopar a day ,scared to rush into it ,just want to feel a bit better .is it all trial an error ,so upset with my pd nurse .she told me it would work after 40 minutes ,last for about 5 hours then take another one .dont take any before bed as it will keep me awake.so dissapointed when nothing happened.how long did it take you,and how much did you take before it made a difference.also how long was it before you had to up the dose,many thanks for your help
arnie and moonstar
my philosophy, which i dont necessarily recommend, is I require being able to function at a reasonable level to support my dependents and I will take whatever is required to achieve that. I am not going to sacrifice the present for the future.
Arnie - everyone is different, so yes it is trial and error. At your stage I found 100mg enough. I find it takes 20 min to kick in and lasts about 3-4 hours. Make sure you take it on an empty stomach, drink half a pint of water and dont eat for 45 minutes.if that doesnt work either its not enough, you are not absorbing it for some reason or you dont have pd (unlikely).
Hi Arnie and Moonstar,
I am 73 and was diagnosed 2and a half years ago,but had it longer.
I was started right away on Madopar 62.5,3 times a day,after being on them for 2 weeks I noticed a considerable improvement especially in my walking,stiffness,etc,I do not have a tremor.
I now take 125 Madopar 4 times a day and a controlled release of 125 at bedtime,this definitely helped me at night.I also now take 10mg selegeline,this was prescribed after being on Madopar for a year.
Hope this helps. Cheers Anne D
Thanks turnip, I'm going to try taking 100mg tomorrow morning and see what happens, I really do value your opinion and advice, I will keep you posted, many thanks
Turnip it's me again, forgive me for asking, how old are you, and how long have you had pd, are you mobile, active etc, I'm so glad your on here, so much help, when you first taking madopa, what dosage worked for you, please I hope I'm not being rude with my questions
ps arnie - if you are n a high protein diet that could interfere with levadopa
i am 54. i was taking a large dose of requip at the time as well. i think i started on 100 3 times a day. soon was added slow release capsules. i'v been diagnosed 6 years this very week. i went on a 2hr bush walk (i live in oz) with my daughter on saturday. it took most of sunday to recover but its good to be able to do that, ! i am still at work part time. mornings are worst because the meds have worn off. getting out of bed without pulling a muscle or ligament is the main thing. i take my first dose right away and dont have breakfast for an hour and avoid protein. i can feel it work within 5 minutes.
i am planning on having dbs within the next 3 years depending on circumstances. if so, and it works, i would hope for another 10 or more active years. perhaps in that 13 year window gene therapy or stem cell therapy will be developed. or then again i might get run over by a bus tomorrow.
Turnip, can't Thankyou enough, Get the bus idea out of your head, I need you lol
Hope I'm not bothering you to much, and your not at that bus stop, when you were taking 100mg 3 times a day how effective was that and how long before you had to up the dose day,
I was diagnosed with pd August 2013 at 47 yrs of age i started on Azilect straight away but it did not do much for me so i was given the option in the November by my neurologist to either start a DA or Levodopa the neuro did say a DA wont work as well as Levodopa and he thought i would need to go on Levodopa in 12 months so i opted for Levodopa i to was worried about dyskinesias etc but neuro said the drugs have come a long way and the dyskenisas are not has bad as they used to be but if and when they become a problem there was the option of dbs he said the chain of thought now is not to delay levodopa because your young , , i started on sinemet but could not tolerate it the nausea and vomiting was awful so i changed to Madopar in January this year i started on 125mg 3 times a day i now take 125mg 5 times a day at 3 hourly intervals as i find my symptoms start coming back after around 2 and a half hours , i feel i am now on a pretty much stable dose , and i agree with previous comments about not taking it to late at night i find it keeps me awake and when i do drop off i can have the odd vivid dream if i take it to late at night .
Everyones experience with pd will be different and as turnip says you need to find the right drug dosage for you and that can take a little while