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?

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.