I have been taking slow release Ropinirole, alongside Selegiline, for nearly 3yrs. now, gradually building up to 12mgs. per day. Although quite a small dose still, I feel the side effects make me worse. My best time is always before I take my meds. at 8am.....
My neurologist suggested I try gradually reducing the Ropinirole and cutting it out altogether, to see how I get on. Has anyone else come off their meds. and how did you cope with it?
I'd be very interested to hear from anyone, please.
Hi Twinks, I take Ropinirole 16mg slow release once a day, my neuro would like me to take Co-Careldopa 62.5mg 3 times a day as well as the Ropinirole, she obviously thinks the Ropinirole as not enough on it's own, although I have been ok on it, until lately that is, now she doesn't want to increase the dose any more.
Hope your neuro has given you a regime to follow for reducing the intake of your meds and given you back up if you get some sort of setback, also to contact your PD nurse and inform her of the situation so she can give you any help you may need, I can't say you will ,but being on any meds for a number of years may give you some sort of withdrawal. I have been on the same meds for 5 years, nothing else, so I would be interested to know of the outcome. I don't want to frighten you but I know a couple who had a bad reaction,I'm not sure if it was the same meds as ours though. There is always the helpline you can call for anymore info.
Interested to hear your story. Thanks for replying.
My neuro just told me to reduce meds by 2mgs. every fortnight or so, until I was off all Ropinirole. I still have to take 10mgs. of Elderpryl, (Selegiline), every morning and 5mgs. in the afternoon. He was not very helpful and said the whole exercise was up to me to decide whether to try or not. I left my appointment feeling rather confused and a bit of a nuisance. I'd waited 18months. to see my neuro, because of a backlog and I can honestly say, he spent more time talking about how short staffed they were and how his colleagues were retiring before him, then coming back part-time and earning more than he was!
As a result, I asked to see my PD nurse, who explained things in more detail. She said Ropinirole did little good and that the only medication that made you feel better was Levodopa. However, after being on Levodopa for 5yrs. I would probably develop twitches and jerky movements!! She spent most of the time scribbling notes and wasn't interested in offering support.
I am a young at heart 66yr. old, with barely noticeable PD symptoms, to the outside world. So you can imagine how I felt when she told me that. Now, I am even more confused and feel no-one really cares what I do. In fact I am thinking of changing hospitals!
Hi Twinks - Can't believe what you say about your Neuro! No the wonder you feel as you do, I went through a phase where I didn't know who to turn to or where. You think the help is there automatically for you but in a lot of cases it is'nt when you try to look for it. I have a good Neuro now and a good parkinson's nurse (mind you I haven't seen her in twelve months) but i do email her if i have any problems now. But you do feel as if the medical profession don't really care.Chin up and keep smiling though, that's what we have to do don't we. It's good that you are keeping well and the meds are keeping old parkie away to a certain extent. I think we all have good days and bad days with the odd reaction to the meds. I will have 'put up' with parkinsons for 6 years in January, and as with yourself I don't have many noticeable signs apart from the shakes and my walking at times.
Stay positive and any problems can be aired on the forum or you can contact the helpline!
Be careful. I tried to reduce Requip from 8mg o 6 mg and seemed to be successful but suddenly went to pieces and my Doc nearly had me into hospital to recover.
Upshot was that I continued at the previous level,I also take Sinemet.
My wife has been on rasgaline that is suppose to be working alongside sinemet plus, but we don't think rasgaline is doing anything.She is due to see her consultant in a few weeks when we hope to come off the rasgaline , With her not being so good lately we hope to try something else .
I think Rasagilene is thought to be neuro protective but has little effect on symptoms so don't rush into dropping it.
To those who are thinking of coming off Requip/Ropinirole....do Google it and read the advice.
My husband spent a month in hospital being weaned off 36 mg of Requip XL a day and it was horrific.Sinemet was introduced gradually as the DA was withdrawn and he eventually recovered from the OCDs.
I am perturbed that Neuros are just telling PWP to withdraw from DAs without medical supervision and don't seem to be replacing it with Levadopa-based drugs.
Take care
Love
GG
PS This site seems to be getting more dysfunctional.
Today I tried to type for ages with no letters appearing......and still no auto capital letter after a full stop as all other sites have.
I am in the process of coming off slow release Pramiprexole (another DA) as the side effects are becoming too bad. I also take stalevo 5 times a day & 2 half sinemets at night. The stalevo has been increased to commpensate but the main problem has been the symptoms have been a lot worse before the next dose kicks in. I am very lucky and have a lovely consultant who listens and who will see me again in 4 weeks. My PD nurse is also very good. I have had Parkinsons for 12 years and have been lucky as it has been well controlled. I did change consultants though as I wasn't happy with the original one.
I hope coming off Ropinerole is OK and it is very frustrating when your consultant doesn't listen.
You are so lucky to have a consultant who you feel comfortable with now. Was it difficult or embarrassing changing from one to the other? I know I shall have to be referred by my doctor, if I want to go to a different hospital. Are you allowed to pick and choose where you want to go? I need to find someone with an open mind and willing to let me try alternative treatments.....like the Mucuna Pruriens.
I knew you were having problems with meds for your hubby, but I didn't know he had been prescribed 34mgs of Requip XL! I read somewhere that the limited dose for this was 24mg and no more, no the wonder he had problems, and what you have had to go through with his relapse......
Hope it goes ok with your replacement meds Twinks and also the herbal remedy, never heard of it, but see how you go.
Hi Goldengirl The reason my wife was prescribed Rasagline was that the sinemet plus was was wearing off before the next one was due. She takes 4 x 25/100mg a day the consultant said the Rasagline would make the sinemet last longer but this has not been the case..... Is this what you mean by Neuro protective ?
Hi Goldengirl The reason my wife was prescribed Rasagline was that the sinemet plus was was wearing off before the next one was due. She takes 4 x 25/100mg sinemet a day the consultant said the Rasagline would make the sinemet last longer but this has not been the case..... Is this what you mean by Neuro protective ?
Our neuro always said that the Rasagilene probably prevented dopamine cell death or slowed it down.He said it had little effect on symptoms.
I have never heard that it extends the life of Levadopa...drugs such as Entacapone do that. Stalevo is Levadopa plus Entacapone but some PWP have unacceptable side effects from the Entacapone.
As for the drug wearing off before the next dose, many Neuros including ours see the answer as taking the next dose as the previous one is wearing off and when the optimum gap between doses is established, the dose is lowered until the most effective regime is found.
This little and often approach has been very effective for my husband.
The new drug Rytary will hopefully reduce 8 doses a day to 3 but it is not available yet in the UK.
We live in hope!
You could ring the helpline and discuss the situation with experts...that might help.
I do hope you find a way forward that works for you....
As Ii understand it, Rasegeline makes the most of what actual dopamine your body has by knocking out a particular enzyme that is busy mopping up "excess" dopamine as part of the body's own regulatory systems. So in the beginning stages, whilst you are still making some dopamine of your own it can delay the need for other drugs and later make the most of whatever dopamine there is in your body. So in theory it should help everyone but in practice judging from posts on this forum and elsewhere it doesnt help everyone at least at the beginning stage of PD. My personal experience was that it had a somewhat subtle smoothing effect although I can't say I was suffering anything like "off" times..
It's all very technical and a bit uncertain but this explains the neuro protective suggestion....
Propargylamines such as rasagiline have neuro-protective and neuro-rescuing properties via their effect on the mitochondria which interferes with and blocks apoptosis in neurodegenerative disorders.[14] Laboratory studies show that rasagiline has in vitro and in vivo neuroprotective effects but its neuroprotective effect in Parkinson's disease patients is unknown at present. These studies show that MAO-B metabolizes an opioid-related chemical called MPTP (not an opioid itself), into a neurotoxin called MPP+ that in turn creates free radicals. There is uncertainty because the mechanism of cell death in human PD may or may not involve the actions of free radicals, but there is suggestive evidence that the drug slows disease progression. The ADAGIO study found that early treatment with rasagiline at a dose of 1 mg per day provided benefits that were consistent with a possible disease-modifying effect, but early treatment with rasagiline at a dose of 2 mg per day did not.[15] One of the mechanism of a neuroprotective effect of rasagiline is via increasing anti-oxidant enzyme levels; this mechanism of neuroprotection may potentially have some anti-ageing effects.[12] Similar to other compounds which contain a propargylamine structure, rasagiline additionally has anti-apoptotic properties, via its inhibition of voltage-dependent anion channels.[16] Rasagiline is protective against neurotoxic insults from SIN-1, glutamate, N-methyl-4-phenyl-1,2,3,6-tetrahydropyridine, N-methyl-(R)-salsolinol as well as beta amyloid protein.[17] Rasagiline is regarded as having superior neuroprotective properties compared to other propargylamines such as selegiline.[18] Selegiline is metabolised to (−)-methamphetamine whereas rasagaline is not.[19]
So ,many neuros prescribe it as it may well protect the cells...and slow disease progression.
I am interested in your reply about the little and often approach,I am on \madopar and selegeline,recently I came off the Madopar and started on Stavelo but this did not agree with me and I am now back on Madopar.Could you tell me please how many times a day does your husband take his medication?I have been told to increase mine to 5 times a day instead of 4 but at a slightly lower dose.,i am on a fairly high dose of Madopar,I have an appointment with the consultant tomorrow to discuss this further.
I also take 2 controlled release at night,these are 125mg.each.Hope you can help. Thank you Anne
My husband takes his Sinemet 8 times a day...every 2 hours .
The dose is 12.5/50mg.
The neuro told him to take them nearer and nearer together until he had no off time and one kicked in as the previous one wore off. Then he had to reduce the dose until it started not controlling the symptoms.
It took a few weeks , a pill-cutter and a notebook but was worth it in the end!
He told us that patients know their own body and can be trusted to find their own best regime.
He also suggested Madopar dispersible, up to 3 a day as a rescue remedy...eating out with friends for example when a big meal stops the Sinemet working.
If we ever get Rytary in the UK it will be 3 doses a day with the new formulation of extended release.. keeping a constant level.
I hope this helps and please ask if there any questions..
I Thank you for your reply.Is your husband on any other medication for parkinsons?I take madopar 5 times s day 187,50 and 2 controlled release at bedtime each 125.along with 5 mg of selegeline,,before I started stavelo it was 4 times a day each 250 mg plus the 2 at night.I have no tremor have been diagnosed for 3 and a half years.Anyway will see what the consultant suggests tomorrow,thanks again Anne
Billywhizz