madopar and sinemet are very similar but have an different additional chemical that stops the levadopa being absorbed before reaching the brain. sometimes people don't like one and swap. generally i believe they perform much the same.
stalevo is like sinemet but with an extra chemical. quite a lot of people have trouble with this but it does mean even more levadopa get through. stalevo extra has even more of this chemical (entacapone). slow release versions last longer but significantly less levadopa get through. the normal pills tend to last about 4 hours.
thats just the levadopa drugs of course.
I have a skin problem. It gets very dry and scaly, particularly the scalp and feet. Advice welcomed.
my neuro said eating food makes no difference with when to take madopar in 80% of people taking it, but that leaves 20% of us like me, where it makes quite a difference. i have few symptoms first thing in the morning, so wait till 9.30 or two hours after breakfast before popping the first one, then take second madopar late afternoon, both times with lots of water. if i do take it on empty stomach and lots of water, I feel pretty good usually
Boyo - you probably need to ask your gp - there are lots of skin condition and they all look the same! a hydrating creme can be useful though for general dryness.
cheers
cheers
I'd first of all like to thank everyone who has ever taken the time to reply to me.
I haven't been using the forum since it was updated as I was doing well.. I had been feeling good on Madopar 125mg x 3 daily but recently it became less effective. I find I need it 3 hourly in the daytime from 7am, with my last evening dose @ 7pm. I suppose these are my symptoms just slowly getting worse. I tried Stalevo but had too many side effects and although not harmful - toxic orange coloured urine. YUK !
I'm not in a position to give up work yet and working with the public try to hide my "slightly drunk" looking symptoms.
Can you let me know how you get on with Madopar please and what works for you .
Thank you all so much.
Hi Trelawney,
I was diagnosed 2 and a half years ago and started on 62.5mg,3 times a day,now I take 125mg at 7,11,3,7,and a 125mg controlled release at night,also a selegeline in the morning,although this has been cut to a 5mg dose. I could not belIEve the difference Madopar made when I first started on it.The controlled release certainly helped at night.I am also finding the dose not so effective and I had a neuro appt last week and I have to try a 62.5mg dose taken at the same time as the 125 when I think i need it,I have taken one a day at either 11 or 3 and intend carrying on this way,I Aam off to Australia in 3 weeks time and am apprehensive as to how I will manage,mainly with the walking.,if I struggle i will take 2 of the 62,5mg at 11 and 3,I go back to the Neuro at the beginning of December to see how I got on in Australia,the neuro said the average maximum dose is 1000mg a day but some people do take more,I do not have a tremor.
Hope this helps Cheers ANNE
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Thank you Anne for a very interesting response.I was diagnosed in October 2012 but had symptoms for a year before that trying to get diagnosed.. No one has ever discussed my taking 125mg with occasional 62.5 mgs but I think it would help me. I get a real drop after 3 1/2 hourls just before my next tablet. Taking it 3 hourly helps May I ask how does Selegeline work? Why do you take it alongside Madopar.? Like you I don't have a tremor. I only tremor if very stressed or very cold.I get a lot of bradykenesia and it affects my speech and thinking. I try not to think of how I might be in 10 years time and live positively day by day.
I do hope you have a wonderful time in Australia.
Best wishes
Christine
Hi Trelawney,
Selegeline is a type of drug called an (MAO-B) inhibitor,this type of drug is used to help the nerve cells make better use of the dopamine that it does have.,and can also help if the levodopa wears off too quickly,,it may also help to reduce the dose of levodopa you need and lengthen the time between doses.
The neuro I see now was not the one who prescribed the selegeline,he will either take me off it completely and prescribe something else or keep me on the smaller dose,depending on how the extra Madopar works when in AustraliA.
Do you have a Parkinsons Nurse,they are usually very good at advising on drug dosage etc,I also had symptoms for at least a year likely longer before being diagnosed,have kept not too bad since starting the madopar,still rather apprehensive about australia!!
Best Wishes Anne D
Thank you for your advice Anne. I have left a message for a PD nurse to call me.
I've slightly lost confidence with my neurologist so your advice to contacta specialist nurse was helpful. You're bound to be apprehensive about long haul travel but remember to pace yourself and take more supply of meds than you need and put some in different cases and bags in case they get separated from you.
Regards
Christine
1 Like
Hi Trelawney- Christine
Hope you have better luck than I have getting in touch with the parkinson nurse, I have left three messages over the last month asking for some help with meds - but to date no one has called me. I am going to phone my GP tomorrow to see if he can contact them for me in the hope that I can get some response from them.
Regards Sheffy - Sheila
HI EVERYONE.....I HAVE TAKEN MADOPAR SINCE BEFORE LAST CHRISTMAS, AS WELL AS REQUIP XL 10MGS. tHE MADOPAR IS TAKEN AT 8AM 1PM AND 6PM AND THE REQUIP XL AT 9.30PM. I FIND THIS IS SUITABLE FOR ME AND I TRY AND EAT EITHER HALF HOUR BEFORE OR AFTER.
BEST WISHES
DOLLY XX
Hi Dollymaz
I now take 12mg of Ropinirole once a day,and have been told I need to take another med with it. What difference has Madapor made to you and your symptoms?
Thanks Sheila
Hi Sheffin,
Regarding the PD nurse, it might be worth phoning the neuro's secretary in all innocence and asking whether there still is a PD nurse - or something a bit less obvious than that . The neuros oftenn rely on the PD nurses, where they exxist, for the day to day management of the condition and because of this they may give even less info.than they are inclined to..
I had the same loss of confidence when I discovered that they were relyhg on the answerphone for incoming queries and then if you happen to be out the one time in the following few days that they phoned back they didn't try again and you had to resort to the answerphone again. . I think they have improved on this since by actually giving a time slot when they are proioposing to call back which seems quite reasonable to me and not much to ask..
Hi Sheffy.....I take my requip XL at night which is slow release. I must say i have felt so much better since adding the Madopar to it. When i was first put onto it the nurse reduced the Requip and for a few days i did feel a bit unwell until i got used to the change. I have gone up on the madopar once since last Christmas as my neck and shoulders were stiffening up again and legs were feeling a bit heavy again. Now people comment on how much energy i have got, sometimes too much if that is possiblle, my Mum says i am like a whirlwind!!! though i have alwys been a bit that way. The Madopar gave me not only more energy and less stiffness, much more enthusiasm for everything and how i would have coped with all the stress and travelling back and forth with all that has been going on with my man , without it i dread to think. I have an appointment next week with my nurse and i hope to stay on the same dosage. I have never had a problem getting help from the nurses, there are 3 at our hospital and if they are not available i can guarentee a call back within a day. Also my eye specialist has finally got the funding for an eye op that i have needed for some time, and guess what it is for the 3rd Nov, the day before i have to get my Hubby to Haywoods heath for his check up after his tumour removal. Isn't that sods law? i cannot even think about having an op myself just yet until we have got this year out of the way and all of the hospital visits that Mr Dolly has to have. With his Prostate Cancer and all. They are happy to defer me until January so i am grateful for that. Lets all hope that 2015 brings us all much better luck and better health ay?
Hoping that you feel much better on the Madopar as well Sheffy.....keeeeeeeeeeeeeep going matey
love Dolly xx
Hi Dollymaz and Eilleenpatricia for your advice. Still havent heard from pd nurse, resorted to leaving a message for my GP to contact them, if I don't hear anything in the next couple of days I will do what you have suggested and phone my neuro 's secretary and inform them. I know I will have to go on more meds eventually and if you havent had any problems with Madopor I wont feel too worried about going on them if that's the one they suggest. I look forward to the extra energy as well, my legs have felt like lead weights also!
It is sods law as you say about appointments, but hope you can get sorted out with every thing I think you have coped really well with your pd and with Mr Dolly.
My regards and love
Sheila
I know what you mean Sheffy.
This is my 3rd attempt at contacting a PD nurse at my local hospital. I've left messages on the answerphone for the named nurse and ........nothing !
Hi Trelawney
Given up on parkinsons nurse and decided to just stay on the dosage i'm taking at the moment, I think I was going through a bad stage until my extra dosage kicked in.
Hope you still have luck getting through though!
Sheffy
Hi .Trelawny......I have been taking Madopar since before last Christmas and they really suit me well, my dosage is 125mgs 3x a day. 8am 1pm and 6pm then i also take Requip XL (slow release) 10mgs at 9.30pm. I have plenty of energy, eat what i like when i like and sleep ok. I hope you will find that Madopar suit you too.
Best Wishes
Dolly
Thanks for all your helpful replies.
I've heard of people with PD having spasms and I wonder does anyone have tips for very painful spasm of my left wrist and hand at random times rendering the hand useless for a few seconds.
I now take madopar 7am 10am 1pm 4pm and 7pm and I'm considering use of a patch and soluble 1/2 dose of levodopa in between if i need it .which my neurologist is recommending.Does anyone have experience of these?