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

Hi Budgies

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

Nigel