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?
My husband takes Sinemet every 2 hours and soluble Madopar for a boost when needed, usually when protein in his stomach stops the Sinemet working.
This regime keeps him "on" and mobile for most of the day.
He has tried many meds to help from 11pm to 8am but no luck with Sinemet cr etc....he just puts up with night-time problems.
He cannot use a patch as they are all DAs and these drugs ruined our life for many years.
Good luck with the dispersible Madopar...it makes my husband's life much easier.
Love
GG
I have had Parkinson’s for about four years but only diagnosed for three. I take madopar, slowly being increased over the years. Now I am on 125five times a day. There really is no pattern to ,my symptoms. One minute I can be walking the dog or dancing around the kitchen, the next hardly able to walk and feeling shivery inside.
I get a lot of leg pain and now with five tablets a day my dreams are quite weird. It takes me quite a while to get going in the mornings. But I am ok then for a few hours. My worst time being afternoons which limits my life
Living alone is hard as I can’t make plans
I take amitripline at night, it helps with sleep
Any advice on leg pain relief and general mobility. Three days since my madopar has been increased. Surely there must be a better way than just increasing meds.
I just wish I could get out more or plan a trip
Thanks for listening
My neurologist said the constipation was the more important factor as it reduced the absorption of the medication in the gut.
