Hi Soop
My husband felt just like you, as if he had flu, when he was prescribed Stalevo.
The Parkinson's Nurse said quite a few people feel like this and he stopped taking it, He was fine within a few days back on Sinemet.
He tried again a few weeks later and the same thing happened.
It may be worth asking the doctor if it is worth going back to previous drug regime to check.
Love
GG
I can well understand that all this gets you down, Soop. Does it help to moan? One way or another we all moan too much even for our own good occasionally, but I find that voicing all the pain, discomfort, frustrations etc. that PD throws at us, does not always improve the situation.
Johnall, how much Sinemet/Sinemet Plus were you taking? Did you have "off" periods, did you feel you needed more drugs? Entacapone prolongs the working of Sinemet(levodopa) and is generally given as an alternative to increasing your levodopa intake; this is to (hopefully keep the dreaded dyskinesias at bay. Main side effect is gastric/intestinal upsets.Change of medication is often difficult, your system has to get used to it. I do not think it would affect your judgment, but it could make you less alert, even drowsy.
Soop, There have been some warnings and restrictions put out on Domperidone recently, but this is the most effective anti-nausea drug for PD patients. Maybe that's why your GP stopped it? Omeprazole is not for the nausea, but for acid reflux. Changes in medication can be difficult to adjust to , You switched in a short period from Madopar to Madopar and Entacapone and then to Stalevo, which is a (3 in 1) combination pill, containing Sinemet and Entacapone. Sinemet is slightly different from Madopar. If you feel worse now than you did before ask to be put back on the Madopar. Treatment of PD is symptomatic, the aim is to have a reasonable quality of life (for patient and family/partner too). Introduce any new drug or increase in dose at a low level, gradually. Rest, I find is essential too and relaxation, Listening to music helps me enormously. Stress is well known to aggravate PD symptoms..Try not to isolate yourself, human contact is (for everybody) so important and is also a distraction from your own problems. I hope your "perchance to sleep" was not followed by (variation on Shakespeare) " what vivid dreams may come when you have Parkinson's....."
Wish you both well, Kate
Thanks for taking time to reply, I hope my GP come up with something next week I will mention what you have both mentioned as I am feeling so different my whole body even my face rocks and rolls when I get agitated, 
Best Wishes SOOP
Hi All,I saw my GP today (she has been off on maternity leave) right away she saw the difference in me she sent an e.mail to Parkinsons Nurse to bring my app. forward .and asked me to phone the nurse A.M.if I get no joy I am to contact G.P again. Well I hope I get sorted soon as I am wrecked..
Soop x
Hi am fairly new to forum at 56 year old and on patches that helped for a short while so they put me on sine met and it seems as though am no better ?if anything sine met makes things worse legs aren't good at all anyone else had this prob? Love to hear about it
thanks Ian
Hi I am 36 year old and was put on madopar (sinemet alternative) 50/12.5 x 3 daily 2 weeks ago.
Feels like I am walking worse and my legs feel weaker the meds seemed to work the first few days.
Trev.
Hi trev it seems strange that med makes us feel worse ,if you say anything they will tell you it takes time to work at least that's what I was told but no my med is not good maybe yours will work , think we are all Guineapigs hope you get on okay , stay in touch and I'll let you know how I get on getting new med next month I hope , let me know how it goes for you be good to hear from you
take care Ian
My wife suffers a lot with fatigue, has very painful shoulders she is also very weak with the usual balance problems. She is on sinemet, I suppose these are run of the mill Parkinsons problems ? Its terrible for me to see her so weak.
Billy
Hi Billy'
not so good when it's someone else that has PD think bad balance must be the worst ,hope you get something that will help her ,stay bright your self as that's the best med she can have as if it wasn't for my wife keeping me going with her positive attitude well I don't think I'd cope .shout loud for more med stay cheerie
all the best
ian
ps . My legs don't work well
Thanks Ian
Hi again Billy
was thinking today about your wife having sore shoulders think you'll have to shout loud to nhs for her to get some form of pain relief . Some people I've spoke to do yoga or a massage helps ,don't know what they do for balance other than exercise nothing to heavy physio maybe ?whatever you do good luck catch up again sometime when you get sorted (soon I hope ) take care
Ian
Hi Ian,
Hows the meds working for you now since it's been 2 weeks since the last we spoke?
I've been on them 4 weeks now feel a slight improvement in my walking and don't feel as fatigued but that's about it… My arm/hand hasn't improved at all, hoping when I see the PD nurse they sort the dose/medication waiting for my appointment still but should be soon because don't see my neuro till the middle of July.
Trev
Hi trev
good to hear your legs are wee bit better sorry but I can't say the same but never mind , I go back 17th may too see the big guns in Inverness hospital last time I got an extra 2mg on patches no enough . Hope you do ok till mid July the speed of the nhs is beyond me ugh !! ,keep in touch
all the best
ian
Hi Ian,
What meds are you currently on?
I am on 50/12.5 Madopar 1 tablet three times a day.
And yeah you wait awhile on the NHS, 8 months since referal and seen the consultant twice
Trev.
Hi trev am on sinemet tabs and 10 mg of rotigotina patches the patches worked to start with but when I got the sinemet it went all wrong yet the p nurse said it shouldn't have sinemet is supposed to be good for legs iam like someone making an entry at river dance ha ha and playing the tambourine can't believe you have to wait so long to see doc stay in touch with your p nurse they have more clout than you think my ones pretty good
take care
Ian
I have recently been prescribed Stalevo 1x4 daily,instead of Sinemet plus 1x4daily,as the effect was not lasting as long as it had been.I also take Pramipexole 1.57mgx1 daily.I was told by my consultant to start the Stalevo the next day and stop the Sinemet.I began to feel tired and could not be bothered to make the effort to do much which is not me,also pain in left leg.PD nurse advised to introduce slowly.No better.Anyone else had problems with it?
Grateful for any advice
I
Hi shakycatwoman
sorry I canna help you but am sure someone will know ,try Parkinson's help line they might know better ,good luck to you meow meow
Ian xx
Hi trev
am sorted mainly just by making a few changes timing of med , not smoking , I've gone from freezing to Ferrari I can walk still shake but who cares as long as my walking is good no more tap dancing trying to walk. Hope your well , am of to ma bed now working early
all the best Ian
I can relate to the above comments on Salevo.I have gone back to Sinemet feel "normal"again
Shakycatwoman
Was wondering something if anyone has any knowledge on it.
I am on 100/25mg Co-beneldopa 3 times a day it has seemed to have helped my walking and movement in my ankle/toes my arm is able to be lifted now beside my head now as the muscle in my shoulder was tight, however my hand is still extremely dystonic but able to use it when I concentrate on an item i.e using a cpu mouse.
Would that mean the meds are working fine? And also would an increase in meds help improve the fixed posture of my hand?
I don't seem to have a huge off/on difference is this normal? Could it be because my symptoms are minor at the moment.
Also I have read that it's possible to be diagnosed with PD and the Ldopa don't work for say 20% of PD sufferers is this true? As I have also read that if the Ldopa doesn't work it means you don't have PD but some other form of Parkinsonism.
Thanks for any response.
Trev
