Hi casie I'm on my fourth week post op after a total shoulder replacement. So can totally understand. The pains are easing now. Physio startson4th so may need them again!!! I wish your husband all the best with his knee. SA my neuro nurse suggested go up to 3 doses but now says there's no hurry and get used to the two for now. I suppose it's early days really. Sue
Hi all,
This business of medication is fraught with difficulties. Madopar is the only medication I seem to be able to tolerate and I take 125 mg or 187.5 mg every two and a half to three hours, during the day, gauging it to how I feel. My PD specialist wants me to use Rotigotine patches changed every 24 hours but they don't suit me as they seem to make symptoms worse. So I've dropped them after giving them a fair chance. I also take Madopar 62.5 dispersibles on an as and when basis and a slow release Madopar at night.
Getting the level of Madopar to an optimum is probably nigh impossible as I believe demand varies from day to day and week to week, depending on psychological and physiological factors as well as diet, mood and situation. I've tried all the agonists except one and none suit me, so I'll stick to Madopar. This facial Distonia is my worst problem.
My PD specialist says that each case of PD is different and really I'm suffering fro Jules disease. Every individual will need specific medication. Frustrating is'nt it?
I always have a nap during the day (after all I am nearly 78). If I have a bad switch off I will sometimes sit down and sleep through it.
I've never had the remotest signs of OCD.
Hope this rant is helpful
My photo was taken when I was 19, pretending to be bitten by a concrete fish.
Regards, Jules77
Have you run Entacapone along side the Madopar Jules? i'll guess you may have tried, i'll also guess we see the same people as we both live in the same hospital catchment area, at clinic B ipswich hospital.
You're a bit naughty sea angler. I'm intrigued by your detective work on the hospital I may attend. You're a friendly and helpful guy but I thought personal details were not supposed to be on this forum?
Entacapone was the first agonist I tried. It made me ill.
Jules77
I'm not much of a detective(although i did pass two selection tests before i became ill) i just read your profile lol, that hospital you may or may not attend serves a very large area so i'm not really naughty. sorry the entacapone didn't suit i guess you were in that unlucky 1 out of 10 it doesn't.
hello popple,im mike i joined this forum last week , finding it and everybody very helpfull instead of feeling alone .anyway ive been taking ropinirole for 9 months since being dx , now ive been given madopar to take along side to gradualy decrease ropinirole then up the madopar, 2 weeks ago .... what can i expect will change because to be honest ive not noticed anything . wondering if its ok to drink alcohol with any of these meds because its pretty vague on the pamphlet ...cant seem to shake off this depression,which ive been given sertraline ,after a long time trying to ignore .. would be gratefull for any advice . thanks
Hi Jules,
Entacapone is not a Dopamine agonist, but falls under the COMT inhibitor label and is always given with Sinemet or Madopar to extend the time these two short acting drugs are effective. At your age it is quite common not to tolerate the dopamine agonists .Younger people tolerate their side effects better. You should. however, have a good response to the Madopar.. Maybe changing the timings/doses could be finer tuned? You do take it on an empty stomach preferably or at least 30-45 minutes before a meal and two hours after a meal,if possible?Levodopa (an amino acid) does not like to have to compete for absorption with other (food) proteins.
Best wishes, Kate
Hi Smudger,
Most people drink alcohol with the Parkinson drugs, but are very careful , so moderation in amounts and alcohol strength is advised and extra careful if still driving. I do not know the alcohol effect on the sertraline, that might be different , as it is more likely that the advice is not to drink at all with antidepressants.
You could start to feel the Madopar effect when you are on the usual starting dose of 3 times a day 125mg tablets. for a week, sometimes 3x62,5mg does the trick. Sometimes it takes a bit longer, but keep the dosis low and do not increase too quickly. The rule with PD drugs is:"go slow, go low".When effective you will feel better on the Madopar than on the Ropinirole on its own.I am afraid you will learn a lot of patience with this disease as change in medication is a matter of trial and error.
Kate
Hi Mike,
Welcome to the forum. The meds., we are given seems to be a lottery of trial and error, as Kate says. I have just weaned myself off Ropinirole, as it didn't seem to offer me any benefits. I'd been on it for about 2yrs. Alongside it, I was taking Elderpryl, (Selegiline), which is supposed to preserve what dopamine you have left and slow down its depletion. I still take 10mg. in the morning and 5mg. in the afternoon. I have now introduced Mucuna Pruriens capsules, which contain natural Levodopa.........doing a little experiment of my own! As I see it, I have nothing to lose, as long as I'm sensible about it.
A word of warning about taking Setraline, with PD meds., as some people react very badly to this antidepressant. My friend's father actually died from this combo. She has a court case coming up soon about this drug, so has gathered much evidence about its potential dangers. Don't want to worry you, but do a bit of research yourself and ask questions.
On a more cheerful note, I understand that moderate drinking is tolerated!!
Twinks.
thanks very much for the advice kate ,ill persevere with meds , being new to these things im probably exspecting everything to happen yesteday . keep well thanks again.
Thankyou twinks . yes im pretty much a happy social drinker so ill take it steady ish ? ,mucuna pruriens ,not heard of that would i find that at a health store or probably online id like to look into that myself amounst other natural remedies ? provided its ok with meds im on .im only on 50mg of setraline like i said on a previous post im usually ok and try to keep a smile on my face but find it hard , very hard sometimes although on the outside looking in most people wouldnt notice it , but inside very very low , im usually very active ,energetic, but all whats going on pd, meds ,divorce, berevement just takes it away from me .. sorry to go off the subjects we were talking about . thanks again . keep smiling dare i say 
I am living with grief as well Smudgers ,I am 3 different people, there is me the Warrior i was and am underneaf, there is parkinsons over it, and then there is the grief & anxiety if not p.t.s.d over that, with me fighting too come through it.
same as sea angler....pd is all new ball game, and my symptoms not too bad at the moment , its everything whats happening along side it , they say its not how many times you get knocked down, its about how many times you get up .. i believe thats so true ... but easier said than done when your dusting yourself off again .... seems like im whinging in a way i suppose i am to be honest and thats not my way normally . thanks for replying...chin up everybody and out for the next round..ps ive normally got me guard up but going to drop it a bit on this forum.. i think ? thanks to you all
Hi Twinks...I am very interested to hear about the Mucuna Pruriens and have been reading up about the effects. I have been taking Requip XL since dx, 2013 and am now on 10mgs which i take in the evening. I also take Madopar which i have been on for 2 years and have felt very good on them. They have gradually been increased and i now take 150mgs x 4 aday, every 4 hours. Recently i have found that they are wearing off too quickly and am lucky if i get a couple of hours from them before the stiffness, pressure in the head and neck and tremors return. My nurse tried me on Azilect, just one in the morning to increase the time the Levadopa works, but i was away with the fairies!! i felt really ill and dizzy, spaced out and weakness. I believe from her that they are generally well tolerated but i had to come off them. i now have an appointment to see my Neurologist but not until May! i have the nurse as a back up but i just don't know what she might suggest next. I feel pretty C*** and wondered what you thought about the mucuna pruriens and if you have had any benefit or side effects from it? i will give anything a try at the moment.
Thanks so much
Dolly
Hi Dolly,
I've only been taking one capsule of Macuna Pruriens, a day, since last Monday. I gradually came off the RequipXL before taking it, as the two can interact in a bad way. I still take Elderpryl, which is similar to your Azilect. So far do good. My head feels a lot clearer and no side effects. I take the capsule with a strong cup of green tea, half an hour before breakfast.
I must stress that this is my own experiment, after doing loads of reading up on MP.
Reading all the posts on this forum, made me realise how many different drugs and combinations of drugs are used to treat Parkinson's. We all react differently to the same meds., so I decide I would take charge of my own illness. I don't feel I should influence anyone else to do the same though. It has to be your decision.
I'm sure your neurologist and nurse will not recommend you try this.
Twinks. (the rebel)!
Thanks for your advice Kate. Very useful.
SA you are an example to us all. Keep your chin up.
Jules77
I think and hope we are an example for each other, on our own we might struggle, we might be vulnerable, individually we might not have the answers for what ever problem that is in front of us in our daily lifes. but we are all on the same road, there is experience of others to guide us to those answers, different opinions but none of them wrong.
My Girlfriends Son said one word that stuck in my mind 'Together'.
Thank you Kate...i will ring my nurse in the morning and see what she suggests as i am gradually feeling like i am not on any meds at all! just like i did before dx. today very weak and trembly and head spaced out. Off to see Dynamo tonight (wish he could weave his magic on me) ! anyway i appreciate what you have said and i am pleased that it is working for you. keep as well as poss and keeeeeeeeep rebelling .....a gal after my own heart.
Cheers Dolly
Your Girlfriends son is very wise Sea Angler.....together is a good word to sum us up. It is so good to have this forum for support and to know that we are not alone in the Parky struggle.
Thanks Dolly
Hi all
just had my meds changed again. The ocd has gone but pain and stiffness have arrived, mainly during the night. Ii have also joined a swim fit classes (Aqua jog & Aqua fit) good fun as I'm tired of waiting for phisio.
new med regime
7am 2x 50mg Sinimet 1x Sertraline 50mg
12pm 2x 50mg Sinimet
6pm 2x 50mg Sinimet
9pm 1x 1.57mg pramipexole. 1x 500mcg. 1xhalf sinemet cr 25/100
feels like I'm starting to rattle
stay well Popple
hi popple
Just wondering with the pain overnight why your taking sertraline in the morning and perhaps amitriptyline overnight instead might help to stop the nerve endings firing and stiffness giving you pain, wouldn't that be 2 birds with one stone so to speak?.
