Long Acting Agonists

[Hikoi]

Hi

I really want to know about Agonist treatment in NZ. i am living in the UK at present which has no restrctions on prescribing so people are on one of three agonists here, Rotigotine patches or Primapexole or ropinerole. All affect slightly different neuro pathways i believe so what works for one, others find doesn't suit them so they can change medication to another agonist.

The most commonly used in GB is probably Ropinerole XL which is taken once a day. It has been available for about 5 years I think and there is now a generic version. I don't think it is available in NZ? Am i right? is there a long acting agonist available to PwP in NZ?

[jocelyngrantham]

I don't know the overall answer to this, but I am on ropinerole though take it three times a day with sinemet. I take 2 x 1mg tablets but was initially prescribed 3 a day but as I felt nauseous my doctor suggested i drop to 2 as generally when nausea persists, it indicates you are taking too much....

[Hikoi]

Thanks for your reply Jocelyn. Do you mind me asking did you know it was avaiable in a longacting version? Advantages include one pill a day, and those post dose tiredness attacks are largely gone. I get a mild one about 3 hrs after my morning med of requip 12mg. It isnt bothersome and if I am busy I don't notice it. I don't get nausea and think it may be less of a problem with the lng acting version.

[Johnson]

I really wouldn't have clue about the different dose rates - I take 5mg ropinerole 3-4 times per day along with sinemet - I usually have tirenesss atack in early afternoon but find that this has a recharging effect on my body. I worked up to the 5mg dose rate over 2-3 years on advice from my Neurologist. Whats good and bad, better or worse I cant tell you - I'm 54 yrs old and waiting for that miracle break through in medical science. I try to avoid the temptation of increasing the dose rate as 20mg per day is getting close to maximum so i believe for ropinerole.

[Hikoi]

Thanks Johnson for replying.

Just to further explain, There are two types of ropinerole on the market. One is short acting so you have to take it 4 hourly or so and the same drug is now available as a long acting pill you only have to take once a day with the same benefit. The long acting type has XL after the name, RopineroleXL. It is by far the most popular type of Ropinerole here in UK and probably Europe. Generally people start on the short acting and then switch to long acting after a month or two. It is much easier to tolerate and also gives a smoother delivery without the spikes and troughs that can happen with short acting meds. As well as being easier to take one pill a day i think it is probably better for our body because of the smoother delivery.

I have just been on the Pharmac site and see that Ropinerole XL isnt approved for funding in NZ. This is very sad I think. While I agree with the control of meds i cant see this one costing the country any more than the short acting. Because NZ is a small market the drug company isn't likely to make a case for it to be available so who does? No one that I can see so we miss out.

My hunch is that people in NZ don't even know what they are missing. As an NZer living in London but contemplating returning I can see that the standard treatment here isnt available in NZ which as you can imagine I find rather frightening personally, changing my regime to one I think is going backwards and less easy to tolerate.

I have been told that PwP are a small group compared to diabetics in NZ for instance but Parkinsons is the second most common neurological condition after Alzheimers. We are as reliant on our medication as diabetics to be able to function.

Yes you are on a high dose of Ropinerole, hope you don't have any of the compulsive side effects - I do, its called the internet lol. Best wishes

[Hikoi]

Thinking again about long acting dopamine agonists, choice of three available to PwP in Europe and none yet in NZ.

[Royt]

Hi, Just joined today and I've been on Amantadine/ Ropinerole for 4 years (Not XL) went up to 18mg a day 3 X 3 X 2mg tablets until Compulsive Online auctions forced a reduction to 12 mg per day with Sinemet and entacapone added to take up the slack.

NZ Govt subsidized my meds in NZ ALOT whereby it cost me only $40 or so for 3 months . Now I'm touring Australia in a Camper The Cost is Hideous!! LIke $100 per month for the cheap 3 and then $5 per 2mg tablet for Ropinerole = $900 a mnth.. I'm looking at alternatives online and may even have to fly back to NZ to get another script mid-way through our journey.

[sheikhmuji]

there are actually 3: there is also cr ropinerole

[Hikoi]

Hi shekmuji

I presume you are referring to types of Ropinerole. Yes there are three names, short acting, controlled release CR and extended release XL. The CR and XLare both long acting and would be interchangeable. Probably different names are used depending on the manufacturer. Ropinerole is generic now but not yet available here as XL.

NZ still uses ergot agonists which have been discontinued elsewhere because of side effects. There are two newer agonists available here ropinerole and primapexole, but not the patch and no long acting ones although Ropinerole and primapexole are now available generically. i guess NZ is too small a market for the drug companies to be interested in putting a case for it.