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.

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

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.

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.