Ropinerol (Requip)
 

Has anyone had their Ropinerol dose drastically cut and suffered a severe meltdown?

My husband's consultant has cut his dose by half, from 16mg to 8 mg daily, and he's become almost immobile.

The effect has been devastating for both of us. Wondered if anyone else had experience of this?

Requip withdrawal
 

I reduced my requip from 18 mgs down to 6 mgs. But I did it over two years, very slowly. I was told not to do it but I knew I had reached my limit. I had become very restless and agitated. Sort of like a caged animal. I had the urge to bolt, I would find myself out driving around in my car not sure of where I was going. I believe you can reduce any medication but it has to be done very slowly.

I'm not a doctor, so take this as you wish, but it seems to me that your husband is now undermedicated.

How long was the titration period?

Was anything substituted?

Why was the dose being cut?

I suggest you get back to the consultant quickly. It may be worth ringing the Parkinson's UK nurse, who might suggest an interim regime until the consultant replies, either increasing the ropinirole or for faster effect, if your husband already takes it, increasing the levodopa.

The 8mg decrease in the daily dose of ropinirole is equivalent to between 160-200mg levodopa per day.

John

Too much too soon too soon can trigger Dopamine agonist withdrawal syndrome, DAWS, which the FDA has likened to the experience of cocaine withdrawal ie. very unpleasant. Are there other symptoms being experienced ? What time frame ?
I would suggest DAWS is a possibility but I am not medically qualified and it depends on the two questions.

Nigel

I posted a quick reply, but goodness knows where it's gone. I shall repeat the post as best I can here.

Thank you so much Evon, Johnt and Niggs for taking the time to reply.

My husband's Ropinerole dose was cut by half by his consultant who telephoned our PD nurse (the consultant is 80 miles away and we can't see him before 18th August, so I SOS'd him via e-mail) because John started having hallucinations - not scary ones, just people/things that weren't there.

His motor/cognitive decline started the next day, and within three/four days after halving the dose he was pretty much a train wreck. He now cannot move at all in bed, can't get in or out, and has to use a pad overnight. This is always insufficient so I have to wash sheets every morning. That, coupled with lying await listening for him to call during the night (we have separate rooms) is exhausting.

There was no titration - the consultant said to cut it in half immediately, and the PD nurse agreed. She told us when she visited that this was the correct route to go, adding that my husband would probably have to cut the Ropinerole out altogether if the hallucinations still persist after a few weeks.

From what you say Niggs this does sound very much like DAWS.

By the way, Johnt and Niggs, I too am in the UK, in the South West - I think we're in the minority on this site.

Budgies,

I'm so upset for your husband and yourself because this just should not happen ! The advice given by the 'experts'/'professionals'/'witch doctors' in this case borders on the criminal and is certainly wrong. The patient leaflet in Requip specifically warns against suddenly stopping this med, which is what you've effectively been told to do, as your Parkinsonian symptoms can get much worse, and thats not even DAWS !
How about contacting your GP, he may be able to issue some titration add on's to slow down the reduction. John is correct your husband needs the meds topping up (requip) and then stabilised,then reduced ever so slowly.
Please feel free to contact me even if it's to let off some steam.
This is a great site, much more 'GO' than the uk sites....great people.

He will get better again Budgies

Nigel

Thanks for replying Nigel. You've now made me feel so sad for my husband that he's had to endure this torturous procedure, which is still ongoing.

We did go and see our own doctor last Monday (she's only in two days a week, as is the fashion these days) and I spoke to her again on Thursday, before she went off for a fortnight's holiday. She said that maybe John needed to go back on a smaller dose of Ropinerole, but she didn't want to prescribe it without his consultant's approval. In the event it seems she didn't manage to contact the consultant before she left for her holiday, so we're stuck with the PD nurse. She visited yesterday and still seemed to think the course of action taken to reduce the drug is correct, saying she can't do anything without talking to our consultant.

So we're stuck between a rock and a hard place right now, and it's ghastly.

I'm glad to hear you think he can recover from this Nigel, because from where I'm standing at the moment it does seem unlikely :-(

Please keep in touch.

So sorry Budgies-My intention was'nt to make you feel worse, I apologise if thats the case. As John pointed out in his post the Agonist class are so slow to settle that problems due to either up/down adjustments take a while so that is why I feel positive . Plus I know of a case involving someone close to me (I must do a thread on this) who had been on levodopa and ropinirole for 10y who had her meds suddenly stopped by her crazy,arrogant husband !
She recovered to the point where a visiting Geriatrician was'nt sure she had Parki's.....but boy did he back-track when he saw the family's jaws drop.

Have you tried Parkinson uk helpline open to everyone, they might have something to offer
0808 800 0303 I think

Nigel

i usually don't reply to posts about medical decisions since often not all the facts are presented and i certainly don't use them as an opportunity to rail against healthcare providers. noone is perfect but i'm not going to condemn neuros in general based on one anonymous post on a message board.

i do find it odd that this patient isn't on carbidopa/levodopa or is he? elderly patients have a greater chance of hallucinations on agonists.

if possible, always a good ideat to try to have extra medication on hand for situations like this, not just if you have to suddenly increase doseages but if medication is lost, destroyed, recalled or in short supply due to supply chain interruptions, natural disasters. i recently saw that in the U.S. there was a shortage of 50/200 C/L CR from one manufacturer. easier said than done on these expensive extended release drugs such as requip xl, it might be a good idea to have some good old cheap carbidopa/levodopa on hand just in case.

Absolutely no need to apologise Niggs - the upset is entirely due to my negative take on things. I'm just truly grateful that you took the time to reply to my post, and enlighten me. The story you told about the woman who had her drugs removed and then recovered, albeit slowly, is truly heartening.

Thank too to you Soccertese for responding to my post. Your input is greatly appreciated. Of course in my mad haste to post I forgot to mention that my husband was also on Madopar 100/25 four times a day, and this was increased by and extra tablet to five times daily a few days before his Ropinerole was so drastically cut.

I have read the Ropinerole leaflet and it does indeed state that when stopping the drug, your doctor/nurse should do it slowly. But what on earth can I say to my husband's consultant, who is supposedly at "top" PD man, when we see him? How can I tell him he's wrong? Who can we listen to if not our consultant? It's truly mind-boggling.

I'd be grateful for any further comments/input. Makes me feel less alone to know there are people out there willing to help.

Forgot to mention Nigel: went to a Parkinson's support group last Saturday morning for the first time, and found it very helpful. The lady that runs it phoned me on Monday morning as she thought I looked like I needed support (boy, is that ever an understatement!) and gave my number to the local Parkinson's UK agent, who has arranged to come a visit me next Tuesday. I'm desperately hoping for some enlightenment through her.

It may not seem it but little changes, such as the visit on tue, often lead to better things . Any dose adjustment can cause problems, Iv sruggled this last month with a double change so upping/downing two different meds is going to be hard.
I complained to my neuro of excessive daytime sleepies when I got to 6mg requip xl
"Rubbish" he said " I regard 6mg as a sniff, I'v got people on 50mg !"
I replied that it may be a sniff but it's a sniff thats made me buy a camp bed for work and pointed out requip had only been tested as safe to 24mg.

Consultants can be intimidating but are just people like us.
They have a duty of care
Whatever the reason your husband was'nt in this state before the changes.
There is no need to confront/challenge....he will see and you will explain how ill your man is and he will make it better,so don't worry.

Your devotion,the love and care you demonstrate is increedible,all you've done,forums,groups,,calls etc you'll win

I'm away next week but will check on progress when I can.

Nigel

You're very kind Nigel, and I have really appreciated your help.

I quite agree with you about consultants having a duty of care, and they should be prepared to listen to us properly. I've been incensed with what I've learnt today, and I'm determined to get answers from him.

Sorry to hear you've not been so great, and hope you feel better soon.

Would like to keep in touch.

Best wishes, Viv

niggs I think you are right, the balance of doses of our different meds and supplements is very delicate, different for everyone, and needs to be changed accordingly. I had bugger of a time with what should have been a very benign addition of an anti-cholinageric to my (what I thought was stable and effective) regimen. my neuro meant well trying to help with tremor, but in hindsight should not have messed with what was working. good luck to you budgies, I hope things work out. (ps I used to listen to a welsh rock band named budgie back in the 70's)

Thanks for the kind words Billy. I hope you continue to keep as well as possible.

Best wishes, Viv

Daws
 

Budgies

My new consultant doesnt like agonists and reduced my ropinerol. It was horrid. DAWS isn't talked about much at all and seems little recognised. I stumbled across information on a forum thank goodness. realised what was happening. There doesn't seem to be much research yet. Here is one article.

http://link.springer.com/article/10....266-013-0090-z

PUK also has an info sheet on their site and looking for it I found this information.
http://www.parkinsons.org.uk/content...inson-congress

If you follow the link in the text you will see that it seems PUK have a campaign around DAWS!

The closing paragraph reads "If you're affected by this issue and would like some help and support, you can contact our confidential helpline 0808 800 0303. "

just curious, what dose/formulation of requip were you taking and how did you like it? if your neuro doesn't like agonists what is going to fill that gap? not being critical, just interested in people's experience with requip.

i needed to extend my on times and try something not affected by protein so tried requip which i had tried 11 years ago and didn't like. due to insurance had to start with the regular requip .25mg three times a day, was a zombie with that low dosage so chickened out after 4 days and stopped which was likely too soon to get used to it. sorry to digress. tried neupro samples and hardly felt anything up to 2mg, after which i stopped since i couldn't afford them but was curious to see if i could tolerate it.

i know parkies that do just fine on requip, stalevo, amantadine.

Thanks for your input dilmar, I shall check out the links you mention.

Do hope you're feeling as well as possible now.

Kind regards.

Hi Budgies

Just wanted to check on you both Viv, any change, appts,visits ?

Nigel

Soccertese, below is my experience both current and historic with Requip which may be of interest.
2009-dx, given starter pack and titrated to 6mg and swapped to Requip xl 6mg.
I was happy on 6mg for many years but daytime sleepies was so bad I got a bed for work. I also went from normal sleep to blocks of 6h's through the night.
I tried without success to tolerate 8mg but was thwarted by full on anxiety attacks . As I was now undermedicated I started sinemet cr 50/200 x 2.
I found that when I started levodopa I had no problems and 18 mth ago suddenly tolerated 8mg requip xl.

Now as stated in my first thread and I apologise for repetition, Iv just increased requip xl from 8mg to 10mg for 2 weeks then up to 12mg.
I have now been on 12mg for 4 weeks and there are some motor improvements but the cost is I am now managing to only sleep in 2 hr blocks,it takes far longer for any meds to kick in, the improvement is mitigated by a significant increase in symptoms when the meds wear off with the added highlights of dyskinesia and awful brief episodes of being spaced when I suddenly find myself, for example, staring blankly at the toilet bowl,not moving/thinking for 30 secs or more. All these negative things are new to me and have just appeared and then got worse over the last 4 weeks in direct proportion to the introduction and build up of 12mg Requip xl.

I am now in the difficult position of giving it another week, hoping to ride it out or reduce to 10mg,the last point at which I saw improvement. Either option is a scary prospect.

As an example of how unpleasant these drugs can be for some people and to illustrate how even a low dose can bring on a world of hurt search for drug user reviews such as 'ask the patient' but look for people who have been prescribed Requip for restless leg syndrome because the doses are minute 0.25 - 0.75mg for this condition.

Another aside regarding dopamine agonists is that although they are classed as 'agonists' when you read the manufacturer's professional info they admit they don't really know how they work but think stimulating dopamine production is the most likely mechanism.

It may not be available to you or suitable but Safinamide may provide a filler function as it is a dopamine re-uptake inhibitor and also there was, though It may have fallen by the wayside, Pardoprunox going through trials. This is/was an part agonist part antidepressant. (again this dopamine/serotonin link)
My conclusion is that dopamine agonists are very serious meds indeed.
Just a final thought the various trials and after market studies show alarming volunteer drop-outs for a drug thats approved and given out,at times,like candy. and yet many people benefit with little problem.

I guess that's why our charity ribbon is grey, 'cos nowt's black or white in Parkinsons.

Nigel

Hi Nigel, and welcome back!

How kind of you to ask how we are. There's no change in my husband at present, but we are seeing our consultant next Tuesday, 18th August. I'm certainly going to take issue with him at halving John's Roprinirole with such drastic results.

The consultant is over 80 miles away. We chose him because he is a top neurologist and specialises in Parkinson's/movement disorders. However, now we've seen how bad he is on communication in times of crisis, we realise that we need to be cared for by our so-called Complex Care Team at our local hospital, where we used to see a perfectly good neurologist before we transferred to this so-called "top man".

Sorry to hear you're struggling with the dreaded Roprinirole.

We'll let you know how we get on, and please do the same.

Kind regards, Viv

Hi Viv,

Just wanted to see how you and John are this morning . Yesterday must have been physically and emotionally draining for you both, an unwelcome ordeal for sure, I do hope your consultant has helped you both this time.

kindest Regards

Nigel

Hi Nigel,

How kind of you to remember that we had our appointment with the consultant yesterday. I'd like to say that it's given me hope for the future, but I'm not sure whether optimism is the keyword at the moment.

When questioned about the drastic cut in Roprinirole from 16mg to 8mg, he stood firm, and wouldn't hear about titration, saying if he felt it necessary he would cut it completely. Fortunately, after hearing my husband's hallucinations seem to be lessening, he decided to leave the Roprinirole dose at 8mg for the time being.

Our main focus was on my husband being unable to move in bed, and to help this he has prescribed Sinimet CR 100mg to be taken about an hour before bedtime. He said that my husband's last dose of Madopar at 8 p.m., when he also takes his Roprinirole 8mg, was not sufficient to last him through the many hours of night, which made sense to us.

We're therefore hopeful that when the nighttime Sinimet kicks in, he might have better nights, and be a bit more mobile, i.e. be able to get in and out of bed for the toilet, rather than having to wear a pad overnight, which, frankly, is ghastly for both of us. Me for having to fit and remove it, and him for the same reasons, plus having to lie in it.

On the long drive home I was fretting that I didn't get round to talking about my husband's decreased mobility during the day, the lack of being able to use a normal toilet, (i.e. one that isn't raised by the special seat the OT gave us) and various other things. There's only so much time allocated in the appointment, and my mind was all over the place.

Having said that, I don't think at this early stage of winding down the Roprinirole that he would have been prepared to prescribe even more medication, so we'll just have to see how the next few weeks pan out.

Sorry for the long-winded reply.

Hope you are as well as possible, and look forward to your comments.

Kind regards,

Viv

Viv

So pleased there at least seems to be a light, however faint, appeared at the end of the tunnel. We have to remember that John's overall intake of dopamine enhancing meds has been significantly reduced and not replaced. In addition, the agonists take by far, in my experience,the longest to settle. It has taken me 5 weeks to start to feel better after a 50% increase and until the last days of that period I was definately more parkinsonian and was thinking "Im worse than ever !" Things are settling but oh so slowly.
So applying that to John,who is decreasing by 50%, from a higher dose,suddenly, who also has a poor tolerance to this class of drug and is now not receiving as much dopamine help.... it going to take a long time.
I suspect your Neuro has this in mind, hence he only concentrated on the night time, which you mentioned to him. Don't kick yourself about not mentioning John's daytime problems as I'm certain he would have said "lets just sort the Requip out first".
A lot of anxiety and heartache could be so easily avoided if consultants actually cared. Just think how much hurt you both would have avoided if he'd said "It's a drastic reduction in ropinirole and you may well feel worse for some time, but we need to do it and it will settle. Then when we've controlled the agonist we can introduce other meds to find a regime that is better tolerated and so achieve better symptom control without hallucinations"

My Neuro is the same Viv, "increase requip 8mg - 12mg, replace sinemet cr with stalevo, appointment 3/12" did'nt even look up,shake my hand or say goodbye....certainly no warnings, titration advice, what to expect.

The lady I mentioned before was told to 'make friends' with her hallucinations !

Just a final word re meds, Sinemet cr is often given at night and seems to be
common practice so should help.

There is a new drug class, the first in 10 yrs to be approved by the EU, called Safinamide .It is a re-uptake inhibitor so works in a completely different way but is intended as a Levodopa add on. I don't know if NICE have approved it for the UK, or if every PCT will allow it. Nor is there much info/experience yet but It may be worth mentioning next time.

Best wishes

Nigel

Hi Nigel,

Thanks so much for your reassurance/encouragement regarding my husband's new drug regime - I can't tell you how much you've helped to settle my mind a bit today, honestly.

I'm so sorry to hear of your poor experience with your consultant. How right you are when you say a few kind, explanatory words would make the world of difference. Although these people may have all the necessary knowledge, sadly it very often doesn't translate to patient care, in that they haven't the ability/time/inclination to make it clear to the patient.

I do hope you continue to feel better on your meds - please keep in touch, as you have helped me more than you might realise.

Very best wishes,

Viv

Requip experience
 

Soccertese
I have taken a long time to reply, sorry. You know that thought " I'll attend to that tomorrow.....
Background:
I started requip as my first medication 3 months after diagnosis. I tritrated up using starter pack and it took a long time for my body to fully adjust Like months. The tiredness got me a bit and some nausea but I persevered. When I was able I changed to the long acting med which is soooo much better I find. Easy to tolerate even without food and smooth delivery. I think the research is it last about 16 hours. I now divide the dose ( 8 mg am and 4mg about 5 pm). I noticed I was getting swelling in my hands when I took it later at night so I take it while still active. It gives me good night cover I think tho sometimes I need Sinemet for my tremor part way through the night.

When I changed countries I could no longer get the long acting med as it is not approved here!! so it was back to short acting three times a day. I hated it and the fluctuations I got on this regime. Added to this a general dislike of agonists by many NZ neuros including mine who decreased the dose only 2 -4 mg but it was horrid - I was an incontinent crying mess for a while. There was no suggestion of a replacement med.

I had been on the requipXL 5 years and it took a huge toll on my body this change. A holiday in Turkey and finding I could purchase XL over the counter was my salvation. My body sigh of familiarity and relief was almost audible. I now have to import it and bite my lip at the cost. I get generic which I find is fine.

So what can I add that could be helpful:
Agonists have their place but take time to adjust to and should be titrated up very slowly
Long acting is a different med experience to short acting
There is a therapeutic level needed to reach before deciding if they are useful
They do cause some oedema and of course the compulsive issues v important to know about and watch for
I still have wearing off usually after 3hours but manage to keep to 500 - 600 mg l dopa in 24 hours. (Thinking of adding entacopone). I'm in my 8th year since diagnosis now. And also take selegiline 5 mg each day.
Soccertese it's a difficult decision about using agonists with no clear answer.

thanks a million dilmar, your experience/opinion is very helpful. and thanks for your opinion nigel. i gotta extend my on times. luckily my insurance will pay for XL with prior auth. just as an aside, i know a number of people with pd for more than 10 years who seem to be doing very well, met them at a spinning class, and are all taking stalevo, amantadine and requip, not sure which formulation though.

a few questions for anyone taking the requip xl
1. what generic are you taking and do you have a preference? i only ask because there are different generics.

just curious dilmar, what benefit do you notice from the selegilene? i used to take it years ago before my symptoms became a lot worse and the main benefit was an energy boost for 1-2 hrs, but eventually stopped. how long have you been taking it?

thanks again.

soccertese,

I'm 10 years post diagnosis and doing fairly well in spite of very bad constipation and emerging dystonia. For instance, last week I did an 18 mile walk, which I would have found easy were it not for a painful lean to the left that developed during the day.

For the last 5 years I've been on Stalevo, 75mg four times per day, ropinirole controlled release 16mg once per day (though I'm currently trying it at 8mg twice per day), rasagiline (1mg per day).

Sometimes I get the brand name Requip XL, sometimes the generic Ralnea XL. I haven't done any detailed measurement of their relative effect, but subjectively I can't tell any difference between them.

The rasagiline has no obvious effect on me. This is consistent:
- either with a low but continuous impact totalling the equivalent of 100mg over a day;
- or with it having no effect.
I've not done the experiment to determine which of the cases it is.

John

A late response
 

Hello soccertese
This answer may be redundant now it is so long after you posted your questions but here goes.
Re generics of requip XL I take whatever I get dispensed and it can change each 3 months. So far it has been ok with no noticeable differences in effect.
I have been wondering about the Selegiline myself. I only take 5mg/day and I think the effects are negligible, it hardly seems to extend on time but I take it at 8 am and it does give me morning energy and I feel alert, it's worth it for that I feel. I have been on it nearly 2 years.

I wonder if you adjusted your medication regime and if so have you got benefit from the adjustment.

Johnt I see my experience is very similar to yours. Regarding taking ropineroleXL in divided doses I am finding it works ok but you may be interested in one observation. At first I took the evening dose as I went to bed but I decided to take it earlier to see if it helped improve pm med control. What I noticed was that taking it between 4-6pm I no longer got oedema of the ankles and so I feel it is better for my cardiovascular system taking it at the earlier time.

Dilmar,

You raise an interesting point regarding a possible link between ropinirol and swollen ankles. This is not something I've considered, nor tracked before. But, now that you mention it, last winter I had swollen ankles, and now, following splitting the dose, I don't. Causality? Who knows?

Once again, I'm left wishing I tracked more symptoms.

John

requip
 

i took requip for over a year.yop dose was 2 mg.very constpating and made me very anxious,also started having myoclonic jerks and muc better Im off.it realy did me no good and alot bad.