QUESTION RE TIME FRAME BEFORE AUGMENTATION STRIKES

[BENGAL1000]

Hi there guys. It would appear that many of you have indeed suffered thru the dreaded augmentation. Would you mind letting us know how long it took from starting the medication, to the onset of augmentation. We hear so many different and varied timetables, that it would be nice to hear if there is indeed an actual average.

[Heatherlss]

For me, pramipexole at 0.125mg became ineffective after around 6-7 months. I began having symptoms early on and during the daytime. I take breaks every now and then to stay at that dose but its become a lot worse in the last 3-4 months to the point that I am being tempted into increasing the dose a little.

[Madlegs1 in reply to Heatherlss]

DO NOT INCREASE THE DOSE.

Unless ,of course, you wish a miserable future for yourself.

🤔😎

[Heatherlss in reply to Madlegs1]

I know ! I am literally thinking of ways to bypass that path and how to convince my doctor to not tell me to increase the dose everytime I see her

[Madlegs1 in reply to Heatherlss]

Give him the augmentation paper by Mark Buchfuhrer et al.

Google it.👍

[Heatherlss in reply to Madlegs1]

I've tried doing so with 3 doctors. She'll be the 4th one in the coming week.

I need better luck

[Hidden]

I am not sure there is a average of getting augmentation, like you have said it can vary greatly. It can be from a few weeks to months or even years.!

[Madlegs1]

Everyone is different, we all have differing reactions and cycling of medication terms.

For DAs it can vary from a few months to many years. Some people have reported over 10 years relief.

In general, I suspect the higher the dose, the quicker augmentation kicks in ( haha)

So--- keep at as low a dose as possible, for as long as possible.

Some people use holidays to delay augmentation onset.

Cheers.

[Hidden]

It depends which dopamine agonist (DA) is involved.

Pramipexole is the worst for augmentation. The figures I've read are 32% after 3 years and 60% after 8 - 10 years.

Ropinirole has slightly better chances of avoiding augmentation.

Rotigotine has the least chance of causing augmentation.

Slow or extended release versions, (such as rotigotine patches) are better at avoiding augmentation.

I don't think there are any figures for over 10 years, because the phenomenon hasn't been recognised for long.

It's generally accepted that the longer the DA is taken for and the higher the dose then the greater the risk.

There is no exact dose that creates a risk. Recommendations, including goverment guidelines usually state that the dose should be kept to the minimum necessary to be effective. That's virtually meaningless as it varies.

"Official" guidelines also appear to be out of step with what experts state. E.g. the official maximum dose for pramipexole in the UK is 0.75mg. I believe experts say 0.25mg i.e. a third.

It also depends on how "loss of efficacy" is treated, i.e. what's done to deal with the DA failing to work as well. In this case it's common to hear of the dose being increased, which increases the risk of augmentation, loss of efficacy being a precursor to augmentation.

In some cases, I've read of some people being prescribed massive doses. The largest I recall being 20 grams.

It's not possible to predict who will get augmentation and when. I've read of people taking only 0.125mg for a few months, myself 0.75 mg for 5 years, others up to 20 years without any apparent sign.

The worst part perhaps of augmentation is not recognising the signs, (I didn't), and in some cases denial.

I recently read of a member vigorously defending the use of Sifrol as they had been using it for 5 years without any problem. They also stated that every time it failed, they simply increased the dose. Six times to date bringing their dose up to 0.75mg. They stated it didn't matter what dose you took.

[YodaDog in reply to Hidden]

I think you mean 20mg, not 20 grams, don't you!

[LotteM in reply to YodaDog]

No, I think Manerva was correct about the 20 grams. But that concerned ropinirole, not pramipexole. Official maximum dose of ropinirole is still 4 mg. Still too high many people think.

[YodaDog in reply to LotteM]

But isn't 20 grams the same as 20,000 mg?

[LotteM in reply to YodaDog]

Oeoeoeoeoeoeppppsssss 😱 You were totally right. Max advised dose according to leaflets 4 Mg. And I guess the dose Manerva referred to was indeed 20Mg.

Brainfog?

Thanks for being clearheaded and correcting mistakes, Yodadog!

[Hidden in reply to YodaDog]

Sorry, It was 20Mg

[YodaDog in reply to Hidden]

Wow, I'm surprised they are still living!

[HilsK]

I have been on Pramipexole for 22 years ... Its use has NEVER been monitored by the GP. I have been complaining of what I now know to be initially side effects of this drug for years and each side effect has been treated symptomatically. No one saw the link. About 5 years ago others things began to happen .. it was like RLS symptoms on steroids! .. but the last 15 months have been hellish. I have only just found out about AUGMENTATION .. and hence am on a long withdrawl programme from Pramipexole.

So in answer to your question ... I would guess probably I have been really struggling since about 2009.... One GP called me a hypochondriac .. another told me it as all in my mind.

One of the biggest problems that I now face if that the consultant neurologist that I have been referred to knows NOTHING about augmentation. I am just penning a letter to him in reply to the frankly horrendous letter ... factually incorrect, ageist, disrespectful and condescending ... sent to my GP and subsequently will be on my medical records. He has initiated a program of withdrawl, seemingly reluctantly however.

[Joolsg in reply to HilsK]

Please sack him. He’s ignorant and quite frankly, dangerously negligent.

Manerva’s advice on how to withdraw is excellent. I’m so glad I found this website as I was helped to get off Ropinirole after 15 years and my GP had never heard of Augmentation ( it’s in the bloody medication leaflets).

Any neurologist who doesn’t recognise classic signs of Augmentation and says it’s to do with stress from your job is incompetent and negligent.

I’m so glad you now realise that and have the research links you need.

Just keep us updated as to how the slow withdrawal progresses and near the last doses, you can see another neurologist who can prescribe opioids to help with the 2 weeks after the last dose.

[Seaux]

I started on a tiny dose of mirapex 25 years ago,(1/2 of 0.125mg) but had to slowly increase the dose over 25 years until I was taking 0.25mg at bedtime. Then augmentation set in. But I think.how long you can take a dopamine agonist varies a lot from person to person.