I have been taking Madopar (levodopa and benserazide) for 2 weeks now. Week one was a low dose 3 times a day, second week a higher dose at 300mg a day.
I have noticed that my finger and hand movements have improved a little, and my arm is less jerky when moving.
Should I be feeling much better by now (symptoms wise eg stiffness etc) ??
It seems to wear off after 4/5 hours ready for next dose.
I am due to see my neurologist soon.
Unsure what I should be feeling, and I appreciate that parkinsons effects people in different ways - no two people the same etc.
Your advice and insight would be appreciated!
You don't say how long you've been diagnosed or if your on any other meds?
I've been taking Madopar 100mg dispersible since april, up to 3 a day along side sinemet plus 4 or 5 times a day and for the last 2wks I've been using Apomorphine injections, I found the Madopar work quite quickly and helpful to get me going in the mornings. I'm not sure what the max dose is for Madopar a day, have you got a PD Nurse? Maybe discuss with your neuro or PD Nurse how to make the meds last longer, a lesser dose more often or adding something else to help.
Sorry I'm not an expert on meds, I'm not sure I've been much help.
So far as I remember from last year when I started Madopar, it took more than two weeks until I felt the full benefit of it although I worked up to the 300 mg doze per day over a month. I am on 100 mg x 3. After 6 months a dopamine agonist was added, but the Madopar on its own did help alot and I think you will feel more of an improvement when you have been taking it after a month. I had side effecta at the beginning such as feeling more tired, have you felt OK on it?
Your response after only two weeks is so much better than my mum's. She was titrated for a couple of weeks (62.5) and has now been on the 125mg 3 times daily for 6 weeks. Her overall movement has improved. Has done nothing for her tremor (which I wasn't expecting) but she still has no arm swing.
Thanks for your comments. I was diagnosed with young onset parkinsonism after a week in hospital (mid July) where I had lots of tests - lots of bloods, MRI, nerve conduction tests, ecg, chest xray and a lumberpuncture. I first went to my GP in April with a tremor but by this stage my handwriting, walking and arm swing were effected, amongst other things like slowness of movement, rigidity, finger movements (see my post around then).
I am on trial of Madopar at the moment, until I next see my neurologist - had only upset stomach as a side effect. I am entering my second week on 300mg a day and my movements have improved slightly. I hope it improves much more!!
I hear that it will take time to find the correct dosage / medication to alleviate my symptoms more... is that true?
I don't know what to expect regards symptoms and any expected improvement..
Patience...It can take a while before full benefit is established. Therefore increasing the dose should be done very, very slowly,and only if necessary. I think two weeks on Madopar is not sufficient to judge its effectiveness. It can be so subtle.
When do you see your neuro? Do you have a PD nurse? I would see one ASAP, just to question whether you should really be on Madopar as a first drug.
Maybe as a first step you could call the helpline above.
Keep us posted.
I see my neurologist at the end of August (due to my holiday, have been to GP and got a repeat prescription to take until then. I will be patient and see how I feel in four weeks time. I certainly feel 'different' in a number of ways, which must be good so fingers crossed. Then see what happens at the end of the month!
Thanks again folks!
Any more thoughts are welcome as this is all new to me, obviously!
It is likely that your "trial" of Madopar is part of the diagnostic process. They often prescribe a levadopa drug and if you respond then it confirms you are short of dopamine but then if you are younger other drugs may be preferred for the longer term. I was never told that how I responded to the sinemet (a similar levodopa drug) would confirm the diagnosis but I put two and two together when the heading at the top of my GP's letter changed from probable idiosyncratic PD to missing out the probable and also from reading further information. Being 69 at the time I in fact carried on with the sinemet.
How long has it been since dx for you? Were you prescribed Sinemet since day 1? Mum was also 69 (less one month) when she was dx. Am interested b/c of similarities
Tapehead was dx with YOPD so the madopar trial may well be to verify the diagnosis. Though I must say from similar patients on here (and elsewhere) no madopar is usually given at this stage (i.e. age). Has anyone with YOPD on here been given this as a first drug as a "trial", for verifiction purposes or otherwise?
Best wishes to you both,
Yes I was diagnosed aged 69. I had suspected something neurological for a few years but had never connected my increasing stiffness in the hips in particular hips. Three years ago, a woman in a four by four type vehicle crossed the road and crashed into my little car almost head on and, although no bones broken just quite severe whiplash, the obvious symptoms of PD - tremors in arm and then down one side, handwriting problems, a vague "nervousness" and tendency to hard of thinking at times. The neuro thinks the crash probably accelerated things. However, although the fact of the crash confused the issue for a while I now feel that it did me a favour as I got a dx 7 months later by which time I would have swallowed anything. On the second visit to the neuro when I asked why the sinemet he confirmed what I had then learned from the internet etc. that above a certain age (I've forgotten for the moment what) you go straight on to the "gold standard", on the assumption I was left to suppose that you will have shuffled (literally!!!) off this mortal coil before serious side effects emerge.
As my mother lived to just short of 100 the 10/15 year period during which increasing amounts of drugs can be expected to work was not so encouraging as I pointed out to the neuro on dx. I am still on the three 100/25 Sinemet with the addition a few months ago of Azilect which smooths out the effect of the sinemet and has made me feel 99% normal again as I did when I first went on the meds two and half years ago. I am now fitter than I have been for a few years - no stiffness, no "hitting a brick wall" fits of tiredness and busy making hay while the sun shines. I do quite a lot of exercise - rambling, nordic walking, Zumba(dance exercise) and yoga. It was suggested about a year into dx that I would benefit from the addition of a d.a.for no particular reason that I could see at the time as I had not complained of worsening symptoms. I resisted this as even before dx I y knew a fair bit about PD and with a father who was addicted to wine, women and song ( and gambling) without the excuse of d.a.'s and a obsessional mother I was well motivated to avoid them.
I hope the above is of help to you. My sons, although very supportive don't seem to be all that interested in the nuts and bolts of PD. Hopefully that will change further down the line if it needs to. Your mother is lucky to have you taking such an close watching brief so to speak.
Thanks for your good wishes the other day re my tactless GP. I used to avoid him because he was rather ready with the prescription pad but now I think he's the one to stick with as he is very intelligent and knowledgeable (probably somewhere on the Aspergers spectrum) and I think I need a pills expert now.
My PD seems to be very straight forward - somethings missing - top it up - no side effects - so I consider myself to be very lucky now I've picked myself off the floor.
Thanks EileenPatricia for the in-depth response! (I've PM'd you as there was so much to say, in response to your post!).
I think it's sad that we refer to a 45 year old drug relating to a non-curable disease as the "gold-standard" but unfortunately that is the way it is.
What an innings your mum had! Anyone who lives to more than 75 years in my family is considered to have run a good race
A quick update - since my previous post the Madopar is certainly having beneficial affects to my stiffness of movement. After 30-40 mins taking the drug my finger taps, arm to nose etc (not as jerky) and arm my swing certainly improve, and feel much 'looser'. I feel well in myself, and my speech and certainly my handwriting have also improved somewhat - I would say that my handwriting is almost back to normal when taking Madopar. My tremor is also not as bad - at times.
Clearly, this is proof that it is working and that I have PD. I clearly see and feel a difference to when I am, and when I am not, under the effects of Madopar.
I am just waiting to see my Neurologist next Wednesday. What the next step is, I do not know..
Your thoughts and guidance on my journey so far, are very welcome and have been very helpful and reassuring.
I was dx 2 and a half years ago - reckon I've had PD for 3+ years. I only started on meds at the weekend (my choice) and its Ropinerole which I thought was a strange drug to be started on. 2mgs for a week then 4mgs along with domperidone anti sickness pills.I'll let you know of any changes to my symptoms
Good luck Renee, no meds for 2.5 years. Good sign!
I'm not up to speed on DA's, others can comment on whether or not they were started on this particular DA. But may I suggest, however, that you get someone close to you to "monitor" you in case you begin to suffer from any of the side-effects of this med (and DA's in general).
Keep us posted and I hope it all goes well.
ropinerole (reguip) is probably the first choice now in dopamine agonists (except in australia!). 2mg is the usual starting amount and slowly titrated up to the amount that works. this seems to vary a lot from person to person.
slow release is more common now though some people prefer fast. fast used to make me fall asleep a few hours after taking it slow release doesnt seem to do that.
it doesnt have an obvious immediate effect like levadopa but gradually builds up.
it also needs to be titrated down and not stopped suddenly. i am down to 12 from a high of 32 (almost definitely too much for me).
Tapehead, am pleased to hear you are benefiting from Madopar. Its like a new lease of life I find.