Need help please

Sounds like your oh  meds are wearing off ,  and if that is the case  they need increasing not decreasing , i take Madopar  125mg 5 times a day at 3 hourly intervals  and i tend to find that my symptoms start coming back after about two and a half hours  less than that if im ill or stressed about something  my tremor gradually starts coming back and  pain and stiffness in my shoulders  i dont want to increase my meds at minute as its usually only  half hour before i take my next meds  and symptoms are manageable for that half hour

I would definately talk to your pd nurse 

This morning my husband got up for work at 630 he took his last tablet stalivo at 8pm last night and he was not limping as much walking better but as day goes on his walking gets worse and limps terribly x

if he gets worse during the day he is under medicated !talk to your pd nurse !

Thanks gus I've left the pd nurse a message today we upped it another 50 but it's not done any good during day he has moments where he isn't limping bad then next thing he is limping bad thank you for your support x

does your husband take tablets on a empty stomach,also does he eat alot of cheese high in protein food try to stay clear off ,it takes tablets longer to get in system

Hi gus pd nurse has rang back she is organising app with neuro by what we told she still thinks he's under medicated so I will keep you informed x

yeh it sounds it maybe there try new meds good luck all !

Need to check about protein - I think one needs to not eat protein close to taking the medication - none 45 minutes before and 45 minutes after.  But then eat as normal, including the porteins, good luck@

your right there !

Going to see neuro on Tuesday we think my husband has dyskensia will it stop if they alter dosage of meds but on stalivo got loose stools as well keeps pulling a funny squinty look as well hope they sort him out x

Hi Jo 

Sounds to me like your oh is under medicated how often does he take his meds I am on a 3 hourly regieme but I tweak it when I feel I need to I listen to how my body feels and if I can push past 3hrs I will,how long has he had PD because the longer you have it the more you u derstand how your body feels and when to tweak the meds, getting a balance is trial and error it maybe that he needs the stalevo increased to 100mg, does he take anything like rasagaline which is a mao-b-inhibitor it stops the levadopa breaking down in the blood stream and allows it to go straight to the brain basically holds the levadopa in the brain longer and helps the meds to work longer well that's the theory its worth asking your PD nurse but I would say he needs to try and listen to what his body is telling him and also diet can play a part in how the meds work ask your nurse see if she has any information good luck.

 

 

hi lilly yes he is on rasagaline  he takes 75 mg stalivo 3 x daily 8 am 12pm 5pm then a 50mg at 8 pm he was ok when he first started taking it then his walking got worse and his foot dances all the time , it has helped his tremor and movement in his wrist i hope it is his tablets and not progression of his pd .

we go and see his consultant tomorrow hope things go ok i have written a list of things to ask.  oh he also pulls a squinting face i hope its his meds one day he didnt do any of this then the next day all this started .  i wish they would find meds that help him not cause problems is it normal to take a long time to get sorted.

Hi we have been to see neuro they have put him on amatidine 100mg 1 daily for a week then 2 daily after that and have reduced his stalivo to 50 mg 5 x daily I hope this helps has any one else tried amatidine x

Hi jo h

I am on stalevo 150mg  7.30am then 3 x 125mg at 11.30am / 3.30pm / 7.30 pm. I am also taking Amantadine 100mg daily. I was prescribed to increase the dose to 2 daily also, but I only take one a day, with my first stalevo now , as I found they can interfere with your sleep and may cause vivid dreams and hallucinations. I would suggest your husband tries the recommended dose and if it causes problems, reduce it down to 1 per day.I get the same symptoms as your husband, and I am having DBS this month, and look forward to having a better quality of life.

Hi gus just to let you know being to see neuro we explained everything my husbands walking is terrible he has got dyskinesia he wants him to stay on stalivo but reduce back to 50 mg 5 x daily  and put him on amatadine 100 mg daily for a week then up it to 2 daily not happy we said he has loose stools  he was very good in one aspect I was hoping they would take him off stalivo due to the loose stools I'm really worried it's going to cause other problems he said amatadine will help dyskenisia we will have to see we seem to go ten steps forward and then ten back .  I feel as if the medical profession don't care we're just a name and number .

 i found when i go to any consultant tell them your problem & if unhappy get them to listenits your husbands body ! hope you get there in the end

Has anybody had intermittent pain in legs when taking amatadine and is it a temporary side effect sick of all these side effects x