Levadopa


#1

Am interested in anyone who is / has been on levadopa as I am being recommended it by my consultant


#2

Hello Clipper

I take levodopa , i started taking it in November 2013 i started on Sinemet plus but i never really got on with Sinemet  terrible nausea and vomitting so i changed to Madopar  in January 2014  which i now take 5 times a  day without any problems at all , everyone is different  what does not suit one will suit another Madopar and Sinemet are both levodopa the only difference is the added ingrediant Sinemet has Carbidopa and Madopar has benserazide  but i definately noticed a huge difference since taking Levodopa

One tip i would give is to ask for some Domperidone to take for the first few weeks till your body is used to the levodopa as the side effects are nausea and vomitting .

As i said everyone is different but i found taking a domperidone  30 mins to a hour before i took the Madopar worked for me after a few weeks  i was able to stop the Domperidone  completely

Good luck with the Levodopa Clipper


#3

Hi

I too have been taking Madopar, since April 2014, no side effects at all or any need to take Domperidone.

But it has not helped my freezing or gait initiation. Shelly, what dose do you take 5 times a day - I am now on 100/25 3 times a day. Do you reckon it would help to increase this?

Good luck Clipper

 


#4

This is very interesting , my husband has been taking Sinemet in increasing doses for seven years , I have never thought it really helped . He has become much worse and is now housebound . They kept telling us he was doing ok !!!

They did add the neurpro patch to help the Sinemet but after five years we stopped it caused all sorts of trouble . 

I knew Madapor was similar to Sinemet but didn't realise the different ingredient . 

I will. will. mention this to the nurse we now have . That is when I can contact her . 

He is so variable , get some pretty good times and then he switches off . nothing is constant with him . 

Pits so difficult to understand how much is progression or meds not working 

 

 

 

 

 

 

 


#5

Hi Johnnie

Yes, it is such an individual condition - my consultant said I was my own guinea-pig, which was not exactly helpful!!

Best of luck with Parkinson nurse, they seem to be the "experts", more than the consultants. A few weeks ago I gradually reduced my dosage, can't say it made anything worse or better, wanted to give up on the meds altogether, but Park Nurse persuaded me to increase them again, which I have done, but no change in my gait difficulties.

Have just started an acupuncture course - very experienced classical acupuncturist who reckons he can stop my gait getting any worse and then hopes to actually improve it. I live in hope too!!!! Nothing  to lose except money, and I am desperate to get some of my life back on track.

S


#6

Hi  Supa

 

I've just double checked and 3 x 25/100, is generally considered the starter dose a far as any effect on symptoms is concerned.  You may have been advised to work up to this initially , to minimise the possibility of nausea but you would  still b on the bottom rung really.   If your gait and freezing problems are that noticeable, as a totally unqualified PWP,  I would have thought you would need either more of what you are on  and/or something else added to control your symptoms.    They like to increase gradually so as to be on the lowest possible effective dose.  I was lucky but its quite common for it to take a year or more before the ttype and dose of meds are arrived at.  Have you read any of the PD UK publications?  They are downloadable from this site. 

 

 

 


#7

Hi Supa

I tale 100/25 mg 5 times a day , yes i find it helps  my tremor starts to become more prominent around 2 and a half hours after i take my Madopar  so it was suggested i go to 5 doses at 3 hourly intervals  which has helped considerably  x

 


#8

I'm still learning about all this medication.

I take Madopar 3 times a day and a slow release co-beneldopa at night. I was then given extra Madopar, but it made my muscle tension worse. The PD nurse tried me on selegiline.......after two weeks I could no longer stand the pain.

I am slowly coming to the conclusion this is as good as it gets. I dropped the selegiline and went back to my initial medication.

The muscle pain is constant in both upper arms, the left being worse. I get varying degrees of the shakes. I have found any increase of physical or mental stress affects this badly.

My other problem is sweating..........you might think a little sweat is no problem. This is not a little sweat, I get drenched and dehydrate. All avenues to stop this have been exhausted.

If anyone has any thoughts on this I would be interested to read them.

Morph


#9

 

    Hello Morph

                          I am sorry  you are suffering with the uncomfortable effects of  your medicine, its most unpleasant and wakes me in the early hours, I used to think the hot water tank was leaking into my bed and as you rightly point out, you can rapidly become de hydrated,which in the worst cases can make blood thicken and cause all sorts of problems, I keep a jug of vodka and lime,,,,?? no  no I dont being silly again,,a jug of water or bottled water beside the bed to counteract the potentially lethal  possibilities of losing so much fluid,anyone who does suffer in this way, please take water to take through the night, de hydration can put you into the Night Terrors world of pain at best, and at worst you will wake up dead, now I know thats just me being daft,,AGAIN, but it is essential to maintain fluid intake, you dont have to take 5 or 6 pints at once, just a half or two or three depending on your needs  cupfulls , it has helped me escape the worst of the dreams , one of  the first things to happen with Dhydion is hallucinations, so if you are seeing strange shapes or creatures in your bed?? no not your wife, you are more than likely in need of a top up. Also  Clipper I dont know if you have read any of my posts regarding the Duodopa, system of delivering a Levadopa Carbidopa gell direct to the small intestine,well it works well giving almost instant escape from parky when refitted in the morning,(it comes off at bed time) and  most days I can avoid the worst of this hellish disease,and as the pump is primed to deliver a precise amount of the mix , with a boost if required, its a life changing device, as the possibilty of overdosing is removed, though as I said I still have madopar capsules or soluble, in reserve,

                                         Kindest Regards            FED


#10

Thanks for that Fed. It gives me hope.

I no longer talk................I gargle. My wife pours so much liquid down my throat the sewage treatment plant phone up complaining and the fish swim about in a hallucinogenic fog.

At the moment I am using my season ticket to the hospital to visit the Urology department. They like to have a nibble at my prostate now and again.

Sweating will have to wait.

At it's worst, when I was in the last throws of employment I was found sitting with a glazed look on my face totally spaced out (no noticeable change to my normal working practise then). My doc was going crazy because my blood tests were going through the roof.

He kept saying drink plenty.........the landlord kept saying don't drink so much......you keep falling over. You just can't win!

I shall discus your info with the PD nurse next time I visit. In the mean time I am trying to get 8 pints of larger a day on prescription.

Tuesday is Urology again. I like a day out!

Morph.

 


#11

Hello!  I have been taking Madopar for the last two weeks or so, dispersibles and now capsules.  I was given the anti-sickness pills...however, I havent experienced nausea etc. yet...feel very lucky!  I was worried about that.  I am now on three times a day and the main side effect is fatigue, sometimes its really bad.  Yesterday I went to bed in afternoon and slept for about 2-3 hours. 

I am emotionally better than I was after my diagnosis in April 2014.  I think I was up and down for about 3 months. 

My left side still affected, no arm swing, tremor in hand and muscle tensions constantly in left foot.  Lying on left side/hip sometimes hurts. 

I have been to ENT at hospital last week, had the tube job up thru nose and down throat to see what probs.  Thankfully everything OK and now am taking capsules x 2 a day for reflux. 

Now taking 11 pills a day - included are thyroid med and statin.  Never have taken so many drugs.  But compared to many of you...just scratching the surface!

My fingers seem to find so much difficult, I struggle with buttons and picking up things, its like i am a baby learning all over again!  Everv hanging out washing, sorting etc. seems slow and fiddly.

I too was worried about taking Madopar, because of possible side effects, but we all need as much help as possible. 

I had a scare Saturday...driving along through green traffic lights and up ahead could see another set green, however they had changed to red and a teenage boy was crossing in front of me!  I realised that I hadnt even noticed and as I got nearer realised that I had to brake really fast to avoid knocking him down.  I managed to brake swiftly but without skidding.  I was just a few feet away, he looked at me and said OK?  didnt seem worried but I felt so bad, never done anything like that before.  To make me more anxious, the car beside me that had stopped at the lights ..the man shouted at me saying "You could have killed him"! 

I hope PD wasnt the cause.  May have just been one of those things, have been driving for nearly 30 years and only had one accident when 2009 tyre blew out on M20. 

Good luck with your meds Clipper!


#12

Het most of what you say is similar to me. Almost identical in fact. Left side affected, muscle tension and sweats. I have had odd hallucinations caused by meds. I find them fascinating although they are not regular events. Best one was a public loo turned into Dr Who's Tardis for a brief moment in time. It made me and my wife laugh when I told her.

The bit that worries me is driving. I gave up on the advice of the Consultant. Believe me it's safer. I drove for a living in some jobs. I would not drive now in this condition.

I once hit a child who ran out between two parked cars. I was so quick on the breaks he did not suffer any real damage. I doubt I would be that quick again in this condition. I still remember the feeling, I was more shaken than the child. His worst damage came from his Mother who gave him a good hiding and yelled so loud at him my ears rang.

I'm no Aunty Mary but this is something I would consider very carefully if I were you.

Morph.


#13

cool

            When I finished work I had 16 licences for all sorts of earthmovers  Excavators Dump T rucks Loadingshovels etc  etc, but my ability to concentrate was abandoning me at a worrying rate and as the lightest machine I used weighed 8 tons, up to almost 45 tons well you could seriously kill someone  in addition a ticking off, and I was not in any way going to be admonished, so I resigned, I almost broke my heart as I loved my job, and still miss it so bad, it was 15 yrs back , I suppose I am saying ,if your concentration is failing you Het ,its time to let someone else do the driving,its not easy I know but the thought of taking a childs life was a major factor in my decision, It was hard, I even tri ed to  retrieve my coveted car licence by resitting a very simple test at the DVLA centre near us, but failed miserably on every count, I was shocked at how my driving skills had deserted me, so I agree with morph, imagine how you would feel if it was just a minor scrape never mind the worst case scenario.

                                        I know this is not what you want to hear, neither did I

                                                      Kindest Regards  FED


#14

Hello Fedex,

just seen your message.  DVLA have requested info from Consultant and he wrote to me saying he gave them info about me i.e. early PD but as he saw me in April and due to see me in early November, he couldnt comment on how effective my new meds have been.  He said he had told them about my anxiety issues from time to time generally.  I think they are waiting response from GP.  I find that I get more anxious when a passenger, I am fine driving on local roads, if I get on motorway I dont travel more than about 50/60 mph.  I avoid night time driving, other than that I think I am still ok.  I want to buy a car for me, but am waiting.  Someone with PD suggested an automatic, that made it easier for her.  I used to drive one years ago.  I am hoping I wont need to stop driving yet.  I was in a car accident in January with my husband, he drove into the back of another vehicle.  Had whiplash, my Physio feels I may still be suffering with post traumatic stress.  So what with PD and experiencing that accident hasnt helped me.  That day I had that concern, may have been in early weeks of taking Madopar.  Fingers crossed!  How are you?


#15

cool

  Hello Het

                  Only you can know if you should be driving or not, far be it for me to asess you reaction times or your ability to concentrate, I only use the visit to the DVLA Centre,where I was properly checked out and properly failed, as I knew I WOULD BE, for someone with over 57 yrs driving experience driving and operating many different species, of vehicles, to be failed , was very painful and I felt humiliated Het,but I could not argue against the decision as I was hopeless BLACKHEART struck deep and hard that day , but im over it now, what made it worse was I genuinely thought I would walk it het,I was scornful of the tiny figure8 test track and must have sounded like a right know all to the examiners. Anyway  thats all water under the, thingy er the watsit you  know  one of those very large constuctions that allow vehicles and trains  to cross rivers and valleys, ah it will come to me,  A BRIDGE, thats it Het, a bridge,sorry I am being daft again, my  Mam says I  am as daft as a box of daft things???? strange  eh?   Getting  back to the seriousness bit, as I said only yourself posesses the knowledge, can you judge distances gaps and the speed of other vehicles, are you up to date with the Highway code, are you comfortable on Motorways and in heavy traffic, do you have a highly developed sense of SITUATIONAL AWARENESS, in other words you must be aware of every thing ahead and every thing behind you when on the public highway,as a example  assume every one else is a idiot and you cant go wrong.

                    I know my comments may not seem encouraging Het, if you want to be sure book a visit to your nearest DVLA TESTING CENTRE, then you will know for sure, also if you do purchase a Automatic, remember to forget your left leg, you must take this very seriously  Het, REMEMBER REMEMBER TO FORGET YOUR LEFT MEMBER, if you dont you will be driving along quite nnicely thankyou and your brain will tell you to change gear, you will imediately go for the clutch, onl now its the brake pedal, and it has a amazing effect  Het, you bang your head on the windscreen as you go from 40mph to 0mph in 100th of a second, while behind you cars are spinning, climbing walls dissapearing into shop fronts ans so on, SO HET REMEMBER, REME,,my Lady has instructed me to stop bullying you Het,   So as we are gettiing along very  nicely just now(nudge nudge wink wink), YES MY LITTLE Velociraptor, coming dearest.

 

                               Whatever you decide Het I wish for you only good things and Hey Hey LETS BE CAREFULL OUT THERE, who used to say that ont   telly, clue  HILL ??????????+

                     Please contact me if I can be of any assitance  FED and oh  I am not too bad thankyou though i am having trouble with my  memory, oh and also I AMhaving trouble with my memory which is a pain, what pain I never mentioned it,,?  Aul  Get me COAT