Starting levadopa


#1

I am seeing my neuro in January and last visit he said when my symptoms worsened I would have to begin levadopa.

I am currently on 6mg Requip and Azilect. How does one effect the change? is it a straight swap or a gradual weaning off one before beginning the other. Will I need to be in hospital (heard talk of a  levadopa challenge which requires admittance to hospital)

 

Thank you

Caroline

 


#2

HI Caroline

I got to 8mg Requip xl and it didn't really seem to improve my symptoms and with the side effects.  My PN dropped me down to 4mg of requip xl, reducing the dose 2mg fortnightly. My levadopa (sinemet) was started immediately and gradually increased over the next 4 weeks.  I found after a week of sinemet my symptoms started to improve i actually started to see increased movement and mobility in my limbs and fingers.  The side-effects of requip also subsided the only problem i had was sickness when taking sinemet which is dealt with anti-sickness tablets which i gradually reduced and no longer take.  Overall the switch to taking levadopa has been the most effective treatment for my PD.

 

Richard


#3

Hi Caroline

usually sinemet is added but the other drugs are not changed.  I understood Levadopa challenge as different from adding levadopa to your med regime, it is where levadopa is given to confirm PD diagnosis.  Hope it goes more smoothly than your agonist experience.


#4

Yes i have to agree about the levadopa being most effective , i was only taking Azilect when my neuro put me on Sinemet plus , i to suffered  a lot of sickness   a course of cyclizine seems to have sorted out the sickness , touch wood

hope it goes well for you

 


#5

Hi Caroline

I was put on 1000mg of Madopar per day about 6 months ago (while also taking 3mg mirapexin) and it has been very effective. My walking is better and generally my movement has improved. I'm on the "good stuff"! As with my mirapexin a major side effect is exhaustion. I do occasionally get some dyskinesia but the benefit outweighs the side-effects. I gradually increased my dose over the first two months. I didn't go into hospital

You may be thinking (I certainly did) that going onto Levadopa is a big step because normally Levadopa is for advanced PD - therefore inductive reasoning dictates I have advanced PD. But this isn't necessarily the case; your consultant may be thinking because you have early onset she wants you to have better movement now and to get the most out of life now. Let the future be (it has not been written yet) and focus on now!

Good luck with it!

dr jonny

PS. I may have fairly aggressive PD (boy do I feel lucky!) because even on Levadopa my symptoms are beginning to emerge again (especially my tremor). This disease is a continual challenge!


#6

that is a lot of levodopa , dr. johnny. I presume you take 8 times 125 mg Madopar, this gives you a total of 800mg levodopa / day. Did you start Madopar  about 6 months ago and increased to this amount in that time? You must now be near the maximum daily dose? I found that  levodopa's beneficial effect  got better over time without me having to increase dose.

Caroline, I did cut back on the Mirapexin (in your case that would be the Requip) once I stabilised on the Sinemet ( from 4.5mg down to 3 mg)


#7

Thank you to all those who replied

, yes I am  worried about going on leva dopa.

The only reason I may have to is because I can't tolerate higher doses of DA's and I have tried them all to  disastrous effect. Requip XL is the only one I can tolerate and then only 6mg. Any more and I get Hallucinations, sleep paralysis, sparkly vision etc. Even at just 6mg I use the computer excessively and have developed hyper-sexuality to a degree.

I am very sensitive to drugs and worry that L-dopa will be equally intolerable, then what?

The only PD drug I've been able to take without debilitating side effects is Azilect.

 

My biggest saviour has been Amitriptyline, it got rid of most of the pain in my neck and back and cured my dizziness but it makes my heart race so I have to take beta-blockers. I take as many drugs for the side effects of the PD drugs as i do for the PD itself!

Caroline


#8

Hi Caroline, I have a friend (diagnosed before she was 40, PD for more than 10 years)) who is/was very sensitive to levodopa . A few months ago she underwent DBS surgery, this was really her only choice left. So far the result she really hoped for has not (yet) materialised, but the neurologist and the neurosurgeon insist she should be patient for a little longer trying to convince her that they will get there in due course.

Maybe cutting back on Requip at the same time when you start on levodopa would help.Levodopa products give fewer side effects than the DAs. 


#9

I had dbs and it took nearly a 18months to get the right settings and sinemet dose right i was 40yrs old when i had op,no more tremors or dyskinea,its great got my life back,i was  very sensitive too,even a 1/4 sinemet would make my head,arms go,consultants could not get there heads round it,as your not meant to split a 62.5mg in half.but the old saying ( if its not broken dont try to fix it) tell your friend to give it time.kate


#10

Hi Gus, I am Kates friend, living in Holland. Nice to  meet you! You gave me some hope because I am really getting desperate - I have never felt so awful in my entire life then  after this DBS operation. The neurologist now says she wants to put off the system, to see if it is effective somehow, or not at all. (I hope you understand my English!) I am afraid that the electrodes are not in the right position, due to cerebral fluid loss (?) during the operation.

What I was wondering about: what did you do exactly in all this time before you find the right settings? DId you often went to see your doctor and how come you finally find out what was good for you? In my case we have tried all contact points alone and in combination, but nothing works. A strange thing is that every time we change there are some effects, but they always dissapear after some hours, some days or some weeks.

Does anyone recognise this and can help me dealing with the situation?


#11

Hi,

 

It was my understanding when I was put on levodopa 4 and a half yeas ago on dx.that it was the drug of choice if you were a certain age (I was 69), with Azilect added abut two years  laterter. Longterm side effects such as dyskinesia have been seen in up to     "80% of people who have had Parkinsons for more than fifteen years.....Dopamine agonists cause fewer episodes of dyskinesia than  levodopa"  Daily Telegraph publication Parkinsons Disease by Dr.David A.Grimes.    Given the current life expectancy one might have died of something else before the side effects kick in.    However, as I pointed our to the neuro, this does not sound so good if your mother lived to just shy of 100 and your aunt is still here at 104,  neither taking a single pill.  

The neuro has been recommending rogotine patches (actually d.a.pills in the first instance ) for two or three years.  I'll probably go on them now to reduce the rate of increase of the sinemet now that the ocd effects are recognised  The general approach seems to be to hedge one's bets it seems to me.    In addition, it is now considered that the amount of levadopa they gave years ago was much too high and this could  in part account for the apparent  side effects.    All I can really do is to keep myself reasonably well informed so as to get the most out of the annual ten minute tops chat with the neuro   However, to be fair he has responded immediately the couple of phone calls I have made in the last 4/5 years.  I count myself very fortunate, if anyone can be said to be with a degen.condition, that most people would not know I had PD if I did not tell them where just before dx. I had a tremor (more like shaking) all down one side and was a bit hard of thinking and easily flustered, all of which improved after taking sinemet   The mental symptoms took quite a bit longer than  the phjysical..  

Hope the above is useful

 

 

 

 


#12

yeh hi holland good to meet you.when they first turned on my dbs it was like i was back to my old self ,hands ,legs all worked again,then about two hrs later eating my dinner my finger started to rise then my hole body went out of control,shit my life was over! sensitve to meds, then my pd nurse turned off my dbs,and waited for the sinemet i took to wear off,about 45mins to i came back to normal,i thought this has not worked for me,she said wait tried some different settings all ok again.lowered my dose of meds the next day all good! smile.went home had 3months of work all good at mo.went back to work tremors started again,back to hospital re-set,went back to work few weeks same again re-set altered meds ok!.this happen about 6 times.then went for stay in hospital for yearly reveiw,not to good at mo bit p---ed off ! thought was it worth it! anyway take you all off meds ,turn dbs off,to see how bad you are this is about 8hrs with no dbs & meds ,not a preety site all over the place ,exhausted,about 2hrs sleep ,then my pd nurse came and got me to go to that examination room where you do all the test walking ,pins in board,writing still of all meds & dbs.then they give you a dose of meds about half a days worth,so you  have a break and wait for meds to kick in.then they start to reprogram you on  new settings and see how good they can get you,still a bit down as she could not get rid of tremor in one hand,where i was sensitive to meds,earlyer in top of story when went out of conntrol.! so i was great walking &  only tremor in one hand,so shit or bust take another dose of meds and it was like a time bomb going of in my head ,running,no tremors i could have kissed her! few more test ,back to the ward kept  me in for a couple of days just to make sure not wearing off like before.and great !smilehad a weeks break from work,went back all good for a couple of days,then felt week,tremors.visit hospital re-set again,just new it had something to do with work,spoke to my pd nurse,and she came to conclusion i was useing all my meds up to quick at work,plumbing/stress & all the tear assing around.gave work up got retuned and been good as gold for nearly a year now,  have to use a walking stick as not to good on feet now,but i put up with it and my speech goes a bit slurey now and then.but what a out come no.!TREMORS,DYSKINESIA NO HEAD GOING EVERYWHERE GREAT CAN EAT AGAIN CERAEL SOUP/AND DRINK A DRINK WITHOUT CHUCKING EVERYWHERE SO YES IM HAPPY WITH IT.ALL IN ALL ABOUT 8 TRIPS BACK AND FORWARD FROM WEYMOUTH TO BRISTOL FRENCHAY HOSPITAL. AND THANKS TO MY PD MOVEMENT NURSE CAROLINE ROBBINS SHE PUT UP WITH ME.   SORRY ABOUT MY WRITING,SPELLING & ENGLISH,.BUT KEEP AT IT AS ITS WORTH IT IN THE END.GIVE UP WORK IF STRESSFULL!wink


#13

HI All

When my treatment was changed to levodopa i was quite upset by the idea, my PN spent a great deal of time explaining the modern approach of using levodopa in early onset PD.  Its is not considered as being the drug of last resort, it is by far the most effective treatment of PD.  A lot of long term users have been let down in the past with over prescription leading to the dreaded Dyskinesias.  The following is an abstract from the BMJ:

Many clinicians regard levodopa as a last resort in the symptomatic treatment of Parkinson's disease. Here we critically review the arguments that are typically used to postpone the start of levodopa for as long as possible. We will point out that most concerns are invalid. Levodopa remains the most effective and best tolerated Parkinson's drug to date, and should have an important role in all therapeutic strategies, both as monotherapy in early Parkinson's disease and as part of combination therapy in advanced disease. Regardless of disease stage, the choice of a particular drug should not be driven by fear of long term complications but by the clinical condition of the patient at the time, with an emphasis on functioning in everyday life and any comorbidity. A ‘phobia’ for levodopa—or, indeed, for any other antiparkinsonian medication—is unacceptable according to current evidence.

My point is don't be disheartened if levodopa is offered as your next treatment!

Richard

 

 


#14

HI DEXON ARE YOU ON SINEMET CR ,AS WAS GOING TO REPLACE MY NORMALL SINEMET PLUS WITH CR TO SEE IF IT GETS ME OVER MY PROBLEM WITH ACHES & PAINS ALSO MOBILITY AT NIGHTIME.


#15

Hi Gus

Yes i CR at night, i have it 4 hours after my last sinemet plus at 9pm with my next sinemet plus at 5am.  Made a big difference during the night and getting up in the morning.

Richard

 

 


#16

hi dexon, i take my last dose at 8pm normally in bed by 9.30pm latest, i take 125mg/ half a 62.5mg very sensitive .Was going to replace 125mg with half sinemet cr/ so just replaceing 125mg sinemet plus with a 125mg cr.due take cr all day.and if so how due find them,.ie difference to plus.  thanks


#17

Hi Gus, thank you very much for your answers, I know I have to keep faith but sometimes it 's hard. You gave me new hope and that's very important, so thank you again!


#18

no problem stick in there, merry xmas holland


#19

sorry to ask holland,was you asleep or awake for the hole operation,i was asleep for the hole op.where did you have op done! just nosey


#20

Hi Gus

I don't feel any difference from plus, but i don't have any adverse effects from sinemet.  Speak to your care professional try at night and see how you get on.  I know of a fellow sufferer who only takes the CR version and copes very well with it, again may worth discussing with your care professional if you get on well with at night.

Thanks

Richard