Hi Golden Girl,
Thank ycu for more information. I saw the neurologist today and I have now to add a disposable Madapor to take along with the first morning dose.I had a chat with him,I can phone him and get an appointment when needed,so will see how things go(hopefully I wont have to contact him for a while)many thanks for your helpful information.
Anne
Hello Twinks
Sorry for the slow reply. I found it very easy to change consultants although I was dreading it at the time. I had asked around at my local branch and one stood out so I asked to be referred to her. I made an appointment with my doctor and he was a bit surprised as it meant quite a journey but it's worth it. He did the change by asking for a second opinion.
I hope all goes well with your med. change.
Hi
I was worried about the effects of R on my behaviour and thought processes. It made me a different person and when I asked my consultant, he told me i could come off it and suggested gradual decrease in dose. I went slower than he said but by the time I was down to 6mg (from 12) I had terrible anxiety and agitation. Like coming off heroin (I would imagine!). This turned out to be DAWS (dopamine agonist withdrawal syndrome) and I had to up the dose (now on 12). Some people can't come off it. I wasn't warned. Now I have had to come to terms that my personality has been taken away. I'm still me, but different. And I wish I wasn't.
I am sorry you are facing such a difficult situation, Athena.
It is not true that some people can't come off DAs.
You can...but it may be hard .
My husband came off a massive overdose of Requip. He spent a month in hospital and suffered but it was worth it in the end.
He now takes Sinemet and has good mobility.
Speak to your Parkinsons Nurse and consultant.
You can become yourself again with proper care and support.
Love
GG
Hi Athena,
I'm sorry to read that you're not feeling yourself, it sounds like you've gone through a really difficult time. Have you spoken to your Parkinson's specialist about your feelings of anxiety?
We have an information sheet that covers Anxiety and Parkinson's, you can download it here
If you would like to talk to someone about how you're feeling or just chat about any concerns please get in touch with us. You can reach our Parkinson's nurses and helpline advisers at 0808 800 0303 or [email protected].
I hope this helps, sending you lots of warm wishes.
Kat
Yes I have a fantastic husband by I'm tearing our relationship apart by obsessive jealousy. I can't think of anything else. I know it's nonsense, but I can't get it out of my head. These drugs do terrible things to your thought processes but they are tied up with shame so that you can't discuss them. No matter how true it is that it is a drug-generated mind-set, people don't really believe this in their hearts and I'm sure my husband is beginning to want to leave me. I don't blame him.
Please seek help Athena.It doesn't have to be like this.
You can get help to withdraw from the DA and replace it with Sinemet.If your consultant won't or can't help ask for a second opinion.
Find someone who will guide you through this.
Many of us have successfully been through it.
I cannot understand how these destructive drugs are still being allowed to cause havoc.
Good luck..
Love
GG
DOPAMINE AGONISTS
Dopamine agonists are drugs that mimic dopamine by stimulating the dopamine receptors (D1, D2, D3, D4, D5) via translation. Although there are five dopamine receptors, dopamine agonists only significantly stimulate some of them. Besides the side effects they cause, dopamine agonists cause the dopamine receptors to become progressively less sensitive, thereby eventually increasing the symptoms.
ROPINIROLE
Trade names : Requip, Repreve, Ronirol, Adartrel
Pharmacology : Ropinirole hydrochloride is a dopamine receptor agonist, with a non-ergot alkaloid structure, that is highly selective for the dopamine D2 and D3 receptors [1]. When taken as oral tablets, ropinirole is rapidly and almost completely absorbed, and it is extensively distributed from the vascular compartment [2]. A prolonged release version allows the drug to be released slowly and continuously so that it only has to be given once daily [3]. Ropinirole 24-hour prolonged release provided continuous delivery of ropinirole over 24 hours, resulting in a smooth plasma concentration-time profile, and food had no significant effect on absorption [4]. Switching from the previous ropinirole immediate release (ropinirole IR) to the prolonged release (ropinirole PR) formulation at the nearest equivalent total daily dose can take place overnight. The acceptance and tolerability are good.[3].
Efficacy : Ropinirole improved Parkinson's Disease symptoms [5-15], enabled a reduction in the dose of L-dopa [9, 12, 15-23], reduced "off" time [5, 7, 18, 24, 25, 26], improved nocturnal symptoms [27], reduced dyskinesia [17, 20, 22, 24, 26, 28, 29, 30], and enabled improvements in resting [21, 31]. Doses of ropinirole have to gradually increase [32]. Ropinirole once daily, twice daily and three time daily were not significantly different in their effects [23, 33], apart from an improvement in sleep [34]. Ropinirole was more effective than bromocriptine [35-40], but not in another study except for causing less nausea than with bromocriptine [41]. Ropinirole was less effective than L-dopa [42].
Adverse effects : The most common adverse events are nausea [1, 12, 28, 35, 43, 44, 45, 50], somnolence [1, 10, 12, 28, 43, 45, 50], impulse- control disorder [46-49], orthostatic hypotension [10, 12, 35, 43], dyskinesia [10, 12, 24, 50], dizziness [12, 35, 44, 50], back pain [28, 44], insomnia [28, 35], hallucinations [1, 12, 50], psychotic features [50], constipation [1], nasopharyngitis [1], upper abdominal discomfort [35], palpitation [35], dizziness [28], arthralgia [28], fatigue [28], pain [28], abdominal pain or discomfort [12], vertigo [43], dyspepsia [43], oedema [43, 44], headache [44], gastrointestinal symptoms [10], decreased wight [50].
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ROPINIROLE WITHDRAWAL
If somebody comes off a certain drug, the most effective means is to do it as gradually as possible with the reductions being as little as possible. Otherwise, whilst the body adjusts to the change somebody will suffer from withdrawal symptoms. The longer a drugs stays in the body the longer the time that should be taken to reduce or withdraw it. Ropinirole stays in the body a long time, far long than L-dopa, and so must be reduced very gradually.
Hi twinks
I was on requip up to 8mg slow release.I also was taking 6 oo c/l.I had bad constipation,myoclonus and felt lousy.Went off requip 2mg drop every other day.Got rid of bad constiaption which is also very bad for PD in genral,limited absorbtion..Also mental state can suffer on agonists.Agonists are also possible seizure risks.My jerking was worse on equip.
Now Im just taking 5 25/100 c/l and 1 50/200 befor bedtime.Coffee in am does wonders for mobility along with exercises.Also taking less more frquently seems to help my jerking issues
I have learned to be my best source of care through trial and error.and to rely on more meds at LAST RESORT
Hi John,
Pleased to hear you came off Requip successfully. I took my first Madopar capsule about half an hour ago, so we'll see what happens as I gradually build them up........bit scary really! People on here seem to benefit from it, so I'm hoping for an improvement. You mentioned coffee being a boost to your general wellbeing. Would that be ground or instant? Funnily enough, I've starting drinking more coffee recently, instead of green tea, which is what I mainly drank. I tend to go with whatever my body tells me, food and drink-wise. Yesterday it told me to eat a whole bag of liquorice allsorts!!
Best wishes.
Twinks.
Hi Twinks - how are you going on taking the macuna pruriens, does it actually work for you? If so where can you aquire this or these alternative meds from? I may be prescribed different meds to run side by side with my Ropinirole but i'm feeling apprehensive about any side effects than may occur with the conventional meds.
Regards - Sheila
Hi Sheila,
I gave the Mucuna Pruriens a good six month trial, using capsules, tablets and powder form. I think they all gave me some little help, but probably the powder form was most noticeable. It was difficult to get the dosage right, as I didn't want to take too much, due to the whole experiment being unsupervised by an expert. So in the end I've chickened out and decided to go back to conventional meds., as I felt I needed something stronger. I just hope there are no horrible side effects, like I had with Ropinirole.
I wouldn't take MP with Ropinrole though, but it's OK alongside Selegiline or Rasagiline. If you feel like you need more meds., I would get some expert advice. I'm reluctantly on the Levadopa now......so we'll see what happens. Like you, I worry about the side effects and long term damage it can do to other organs.
Hope you get sorted and keep us posted.
Twinks.
Thanks Twinks taken it on board, will keep you informed! Hope you are coping with your meds ok.....
All the best - Sheila
Hi twinks, my neurologist has recomended i come off gradualy too. Im on 8 mg at present. Having side effects already but must persevere with it as 12 mg gave me severe panic atacks and i couldnt function properly. Let me know how it goes with you, best of luck
Hi Sylows,
I'm interested in your post as I'm on 8mgs Ropinerol at the moment. I seem to be fine on that dose at the moment. Seeing my neurologist on Mon to maybe tweak meds by changing to levadopa. I'm a bit undecided as fine at mo but for how long? I need to go to appmt with arguments for and against. Anybody got ideas?
Hi Sylows and DivineR,
The Madopar (levodopa) makes me feel great when it's working........much better than the Ropinirole. Have been on it nearly a year now and gradually increased from 3 to 5 a day. My symptoms have virtually disappeared altogether and all pain gone. The time between 'on' and 'off' periods has reduced unfortunately, but by supplementing with Mucuna Pruriens once or twice a day, I can extend the 'on' time considerably.
DivineR, if you feel OK on Ropinirole, I would stick with it. Depending on your age, I would save Levodopa for later. It tends to work well for 5yrs. or so and then needs boosting with extra meds.
Twinks.
Thx Twinks. I'm feeling good at the moment. Apart from usual bouts of fatigue when I don't pace myself. I don't really have off or on times yet so that is what made me nervous of Levadopa just now. Why fix what's not broken. I think I'll stand my ground and stay as I am for as long as possible. Wait for when I really need to increase.
Hi Twinks
there has been a long period since your post but I wanted to know if you managed to reduce the meds & if it made a difference?
my dad is 59 & in the space of near 2 years of taking Madopar he can hardly leave the house now. At the beginning he was only ever slight stiff - never has half. Tremor & had restless legs.
The neurologists only ever suggested upping the meds & since then he has got progressively worse.
He has turned into a selfish angry man & this is not who he really is.
the only time I get my real dad is in the morning before the meds kick In.
i hate them - I blame them for making him dependent on a pill that gives him lease of life for all of 1 hour every 4-5 hour period.
what was your reason for wanting to come off meds
Hi Nic,
So sorry to hear that your Dad's personality has changed. The Madopar has been good for me. It was the Ropinirole that made me feel weird and not my usual self......so I came off it. Also made my eyesight worse and gave me swollen ankles. How many capsules of Madopar is he taking in a day and does he take the dispersible form as well?
It might be worth talking to his PD nurse or neurologist about the effect it's having on his mood. I'm 68 and been taking Madopar for over a year now......feel much better than before.
Good luck and let us know how you get on.
Twinks.
