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

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

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