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

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.