I was diagnosed in May 2012 but had symptoms several years earlier. I eventually reached 10 mg Requip XL with improvement in movement and body ache ( I don't have tremors). In spite of this I had a general feeling of being unwell with anxiety and lack of energy.
My neurologist suggested I reduce Requip XL to 8mg and introduce Madopar 25/100 twice daily. Within 24 hours I felt like a new person almost feeling normal again and so thankful. Unfortunately this only lasted about 6 weeks and then I returned to the old me having little energy and walking is quite a struggle. The general feeling of being unwell has certainly returned.
Is there anyone with a similar experience and could I just be under medicated with the Madopar? I feel so disappointed whilst appreciating this condition is ever changing and am wondering if maybe I am just going through a period of my symptoms worsening. Any views would be so appreciated.
Hello Polly M
After a disastrous time on Mirapexin I was put on Madopar last year(dx Sep 2010)and have been on 25/100 x 3 daily since last october. Has helped with walking, now walk well without shuffle, balance has improved and freezing stopped. However still have fatigue, although interspersed with more energy , and anxiety whch I m addressing with Cognitive Behavioural Therapy. Also still have tremor in legs.
To be honest still not sure if I m under medicated or whether this is an acceptable response to this dosage of Madopar. Neurologist seems to think I should have responded better at my age,57, but I have to remind myself that, before Madopar, I couldn t walk without shuffling and can now walk for an hour most days. Think both your and my dosages are considered fairly low.
My perspective only, I m sure other people s will be different.
BW to you
HI, I was diagnosed in MAY 2012 but had symptoms for at least a year before,was started on madapor 62.5 3 times a day,i have no tremor,in November was started on ropinorole but had to come off that as I felt my legs were worse the madopar was increased and am now on 100/25 3 times a day and 100/25 CR at about 9 at night,in MAY I was started on selegeline 5mg once a day now up to 10mg and feel I am doing quite well on this,hope this information may help.I am nearly 72.
Hi Polly M,
I have been on Requip XL for 4 years now starting at 16mg then 12mg , and for most of the 4 years on 14 mg and about 2 years ago, they added 100/25 Madopar 3 times a day, but I didn't notice any difference by taking the Madopar.
Franky I have always felt over medicated, and therefore only took 2 Madopar a day, but lately I have been falling a lot and can hardly walk somedays, so I have added the extra Madopar for the last three weeks, and I am already starting to notice a difference/ improvement - they say that it can take 6 months to have a real effect, so i'll stick with it I think, and it may be advisable for you to persevere also?
Hi I have very similar story to Polly M .I was diagnosed March 2011 with symptoms for stiffness slight tremor ,balance issues and pain very evident for at least 2 years pre diagnosis.
Been on Requip XL 10mg daily and Madopar 12.5/50mg x 3 daily.Periods of lethargy and fatigue increased over last 3 months and I suspect I need an increase somewhere! I have never liked taking medication and will hold off for as long as I can .
Thank you so much to you all for your responses.
It is so good to know that there are others out there who understand what we are dealing with. I am 64 by the way and think have had PD for about 4 years. I have a wonderful Parkinson's nurse and am very fortunate that my neurologist is excellent and listens which is something a lot of you lack.
As we all know this can be a very isolating condition and love and support go a long way to making life pleasurable.
Best wishes to you all
madopar. Hello, this is the first time I have used the Parkinson's forum. My husband has been diagnosed with Parkinson's, four years after being diagnosed with Dementia. he was prescribed Madopar 12.5/50 three times a day, then our G.P. upped the dose to a slow release dose of 25/100 at night,then the dose was increased again to 2 25/100 at night and the first morning after this increase Will collapsed/ fainted as he walked from the bed to the stair lift. we had to call an ambulance and the Paramedics said his blood pressure was so low, that this what caused the fainting. Will has had quite a few of these ' Turns' and I am very, very apprehensive at mornings now, as to if he'll have another. has anyone else experienced these faints, it seems as though Madopar can cause a sudden drop in Blood pressure. We have an appointment with a consultant on 23rd August and I am hoping he can sort things out for us.
I was taking Madopar but never felt well and was very depressed and anxious. I was changed over to Sinemet and immediately felt better, more energy, less panic attacks. I know they both contain the same amount of Levdopa but the other ingredients differ slightly - perhaps you have a similar problem as I did with the other ingredients.
I have also tried Mirapexin - felt too ill to get out of bed. ANd also Stalevo - which made me very sick. So I guess its another game of trial and error to see what suits each individual.
Hi I was on madapar 100/25 qds as I have said in earlier posts everyone thought I was doing well But I was getting so tired and selfish ,aching the lot SO PD Nurse has put me on Stalevo for a couple of months Luckily that time is nearly up as if anthing I feel worse Tired sore cant think properly loss of appetite I would be happy to stay in bed all day but luckily OH and family keep encouraging We all live in hope we will find the right meds for each of us .
I find it amazing (and very intriguing) how variable this disease is. My consultant is being quite aggressive with my treatment, I understand his reasoning and I agree (I'm 34). I'm on 250mg madopar 4x a day and 2.75mg mirapexin 1x a day. This has given some of my body back to me; I am walking better, my hand have more dexterity, I respond quicker. But its not perfect; my tremor is still prominent and my movement could be better (of course!); I am also getting some dyskinesia in my left leg. AND the tiredness, oh the tiredness!
But I see these things as a cost/benefit thing (in the absence of a cure I think I'm forced to think in this way); currently the benefit of better movement is not outweighed by the tiredness and dyskinesia. When the scales tip the other way it is time to rethink my options...
I also think we should have a say in our treatment; it is our body after all (well shared with Parki's) - go back to your consultant, challenge them!
I was dx in 2005, started on propanalol, added mirapexin (currently modified/slow release) then sinemet moving onto sinemet plus and sinemet controlled release for nighttimes.
The daily flucuations in symptoms coupled with special meds timings for the day's schedule means the off periods can come on quite suddenly. Madopar 25/100 up to 4 times daily was prescribed to act as a booster in-between as their efficacy comes on and off quickly.
That's just my experience, you need to be the one driving the meds by asking your PD nurse and consultant what's available. In return they need details of how current drugs are working. That's also why carer or friend's support from a 3rd party viewpoint is so beneficial.
Hello Friends, I was on madopar for 10yrs It was the only drug powerful enough to hold back the worst of the PD but It produced alarming side effects evil dreams, also ocb which was very hard to deal with in fact it was dangerous I have largely adapted to the DopaDrugs now in fact I think I am becoming tolerant of the Dudpa system as I find I am having to take a boost more just in order to keep mobile, this alarms me as I have tried every combination of drug to not much improvement so if his system cannot stay ahead of the deteriation I am doomed, Madopar is a powerful drug so expect troubles at first but percivere as it does do the job ,
I am vert Dysky hence the mitakes so I will go now. Night Night I wtsh you a deep dreamless sleep
Kind Regards Fed
Since April this year I have been taking 125 madopar five times daily, azilec. ,16 mh nuepro patches and I feel am now worse than when I started. I Am going for a cardiac MBIR ? Scan this month to see if I hve Parkinsons or atypical Parkinson's syndrome which is not treatable. I am very worried and frightened about this.
I also have a degenerative disc disorder and last October the three discs in my neck removed. A scan showed I had protruding discs lower in my back but surgery wasn't needed. I pray that this May be cause of my lower body immobility
This might seem a dumb question but is Madopar the same as Mirapexin? My GP seems to think so and is prescribing it for me in the face of the manufacturing problems with the modified release Mirapexin. I currently take 1.31mg daily. My consultant was keen for me to reduce the dose (was 2.1 as 0.7 mg standard release 3 times a day) which was difficult at first but seems to have stabilised with the MR tabs. I only have enough left for a couple of days and am worried what will happen with a sudden switch to Madopar.
i take both mirapexin (also called pramipexole) and madopar (also called levadopa). mirapexin is a dopamine agonist, which means it mimics dopamine (like a stick insect mimics a stick) whereas madopar is the stick (it is dopamine). Didn't your GP check the BNF or at least google it?
i am NOT medical doctor (just PhD) but even i would have to ask why would my consultant perscribe the same thing twice?
It is all a tad confusing, isn't it
I have been on azilect and madopar 100/25 twice daily since Feb. Lately had to bump up to thrice daily, and expected to feel better, but I don't. Mainly the madopar seems to wear off more quickly. Is it the disease getting worse (probably), or have I turned off my remaining dopamine making cells?
Any theories welcome
Since my original post in July I have increased Madopar 100/25 to three a day and am still taking 8 mg Requip XL daily.
There has certainly been an improvement in the general feeling of well being but gradually the all over body ache has returned together with constantly curling toes and swollen feet and ankles. Lying on either side is very uncomfortable because of constant leg ache so very uncomfortable nights!
I am thinking like you that probably the condition is getting worse but am very concerned that the improvement is so short lived after each increase or medication adjustment. It seems on average about three months at the most.
Has anyone else had this experience and could it be that a complete change of medication is needed?
I see the consultant in two weeks and at my last appointment she said she hoped to reduce the Requip XL to 6 mg. which could help my feet and ankle swelling.
I do find this forum so very informative and thanks to all who respond it really helps to know there are so many friends who understand our problems.
Best wishes to all
HI Polly M,
i was also diagnosed in May 2012 and was put on Madapor right away,since May this year I have been on 125 3 Times a day and a 125 controlled release which I started in May,this definitely helped me at night, like you my legs ached and I was very uncomfortable.I was also started on selegeline in May a dose of 5mg then up to 10mg.I also take amitrypmaline at nights 40mg this helps both with sleep and pain,like you I have no tremor.Hope this helps.
Many thanks for your response.
It is always good to hear of others experiences.
hi polly M
I wonder if you have what is known as restless leg syndrome, it's more common in people with PD.
My legs don't ache, but do feel restless if I don't exercise. Generally exercise makes a big difference to how I feel, especially reducing rigidity, which is currently mostly in my right wrist. Try long walks or better yet gym workouts. Nothing to lose, right? Good luck.