Dopamine Agonist doses - the new maximum

[involuntarydancer]

From Buchfuhrer, Mark J., Strategies for the Treatment of Restless Legs Syndrome; Neurotherapeutics (2012) 9:776-790

Both of these drugs should be started at their lowest dose

(ropinirole at 0.25 mg and pramipexole at 0.125 mg) and

increased if necessary every 5 to 7 days by their initial dose

until symptoms are controlled. Although the FDA-approved,

maximum doses for ropinirole and pramipexole

are 4 mg and 0.75 mg, respectively, many physicians exceed

this dose, especially when treating daytime symptoms that

may require 1 or 2 additional doses per day. However, after

10 to 15 years of experience with these drugs, concerns

regarding augmentation of RLS symptoms by these drugs

have made many RLS experts rethink the doses used to treat

RLS, and even whether these drugs should be first-line

drugs of choice for this disease. Due to concerns regarding

augmentation of RLS, in the opinion of this author and

several other RLS experts, the maximum doses of dopamine

agonists should be much lower than the approved FDA

doses (such as 0.25 mg for pramipexole and 1 mg for

ropinirole). However, augmentation may occur even at the

lowest doses of dopamine agonists.

In light of a previous post of Elisse that was raised today, I thought I would look for the genesis of the revised recommended upper limit for pramipexole and ropinerole. I'm not sure if it is definitive but it is Dr. Buchfuhrer so can't really be argued with.

Incidentally, for us in UK/Europe, in relation to mirapexin, 0.125mg is a 0.088 tablet and consequently Dr. Buchfuhrer's upper daily limit (his 0.25mg) for us is the 0.18mg tablet in mirapexin. I think this is the same in Australia. Anything higher and the risk of augmentation increases considerably. Although as Dr. Buchfuhrer points out, augmentation can occur even at lower doses.

[Madlegs1]

Timely.

And great to point out the difference between US and European dosages.

Thank you.

[Hidden]

thank you for this. Do you know what it is for the Neupro patch? Is it 2mg for the recommended maximum dose?

[Hidden in reply to Hidden]

Jess as far as i know the dosage for the Neupro Patch hasnt changed the highest dose is still a 3mg patch.

[nightdancer in reply to Hidden]

Correct, Elisse.

[Hidden in reply to Hidden]

Ok, thanks.🙂

[Hidden]

Can i correct you on the lower dose of Pramipexole. 0.088 tablet for the UK/Europe, the USA its 0.125mgs, not 0.25mgs. So our upper limit that is being recommended is 0.18mgs and the USA 0.25mgs. I would take what Dr. B recommends over anything any other doctor says. Its a shame this info hasnt been passed on to all doctors what ever country people live in.

[involuntarydancer in reply to Hidden]

Thanks Elisse, that is a stupid error in my post. I will try to amend it now as it is misleading.

[involuntarydancer in reply to Hidden]

I have amended it now.

[nightdancer]

I know on his site, things had not been updated for a long time, and you are right, you do not argue with Dr. B. he is the BEST. In his other books he has co-authored, he has the correct doses in Clinical Management of Restless Legs Syndrome, 2nd Edition. That book is golden. Gave one to my doctor.

[involuntarydancer in reply to nightdancer]

Absolutely agree. I would just add however that it is possible to cut the 0.088 pill in half to create a lower starting dose. My sleep consultant suggested I do that many years ago when she started my on pramipexole and of actually worked at that low dose for a while. If only I had known not to increase it ...

[LotteM in reply to involuntarydancer]

I did the same with ropinirole when I started out; half a pill worked well for a month. If the pills are sufficiently large, I bet it would also work with quarters.

[Hidden in reply to involuntarydancer]

I cut my 0.088mgs pill down to a 1/4mgs or as near as, because the 0.088mgs pill is soooo small, it does crumble at times.

[LotteM in reply to Hidden]

Ah. Now I understand. You keep writing “1/4mgs” which I read as 0,25 milligrams. But now I suspect you meant a quarter of a tablet of 0,088milligram prami, which amounts to 0,022milligram. That is roughly one tenth of 0,25milligram. Am I correct? Low indeed. Before I wanted to pm you that 0,25mg is not low but the max recommended dose. But I was confused; I thought you of all people would know better than calling it a low dose.

[Hidden in reply to LotteM]

Yes, i did mean 1/4 of a 0.088 pill, hey we all make mistakes even me!. Its what sleep deprivation does to us, our brains get scrambled.

[Hidden in reply to LotteM]

My comment on the .25mgs was in response to the mistake made by ID which she has now corrected, I KNOW that .25mgs is not a low dose but the highest now recommended. SO, is everything ok now for you. ?

[LotteM in reply to Hidden]

Sure thing! And I totally understand the mistakes, I make them too often too.

[involuntarydancer in reply to Hidden]

I have done this too but it is difficult. I usually lost at least one quarter of each pill to crumbling!

[LotteM]

Excellent post, replies and additions. One to keep (mark?!) for later reference.

[Hidden]

Who is Dr Buchfuhrer? and what makes him the best?

[involuntarydancer in reply to Hidden]

Just to alert you, I posted an answer but unfortunately didn’t do it in a ‘reply’ to your question so see below for full text.

[involuntarydancer]

He practices in Southern California and specializes in RLS. He has been treating patients with RLS for a long time. He is generally considered a leading authority on the treatment of RLS. He has co-authored one medical textbook on RLS and written one himself. So far as I am aware these are the only medical textbooks devoted to RLS exclusively.

He is held in very high esteem within the RLS world because of his unfailing generosity in responding individually to email queries from sufferers - usually responding within 24 hours. He posts all questions, together with his responses on his website rlshelp.org. It is well worth perusing these - if time is available it is informative to go back through the years to see the gradual change in attitude to various drug treatments.

Unfortunately his book is out of date as you point out but the view expressed in it is shared by the RLS team in the Johns Hopkins University Hospital. These are in the forefront of RLS research and world authorities on the subject. Their website is also extremely informative with some excellent short videos.

I would be very surprised if there were any true experts in the treatment of RLS who would now quibble with the upper limits recommended by Dr. Buchfuhrer.

[LotteM]

One randomised controlled trial is only ONE randomised controlled trial. For all the statistics, ithe results could still be ‘wrong’, i.e. an accidental but false finding. And this particular trial - like most meds for RLS studies - involved previously untreated patients. And lasted only a relatively short time, compared to the many years if not life-long symptoms of many people on this forum. Also, on this forum, the majority of frequently posting people have severe, refractory RLS. Very, very few studies with such patients. Btw, patients in randomised trials are NOT selected for being representative of the general population. They are selected because they fit a number of preset criteria, for one, having RLS when participating in meds for RLS trials. You may be aware that most of older disease and medicines studies were carried out on/with Caucasian males in the age group of about 25-50 years. I just mean to say that even randomised controlled trials have their (huge) limitations, and not only for the things I mentioned. And science is never about the truth, but about testing and falsifying (=disproving) hypotheses. I know ‘from the inside’, being an active researcher and scientist myself, though not currently in the field of diseases and medicines.

[Hidden]

Thanks for passing that on. We are between a rock and a hard place... I am in Australia and started on 0.125 Sifrol. doubled to 0.25 and that is the limit.

[involuntarydancer in reply to Hidden]

You could try using a different class of drugs to supplement the siffrol if symptoms require it. Many doctors now prescribe gabapentin/pregabalin. There are also the opioids such as tramadol/OxyContin etc. Many find their rls responds better to a combination of drugs at a low dose than a single drug in ever increasing quantity. It is certainly better not to go above your current dose on siffrol - much suffering lies down that road. Also important to ensure serum ferritin over 100.

[Hidden]

I slept last night.

Thinking stress caused the bad night but not putting money on that! My ferritin is very high. I am trying the naturoparh route at the moment. 1000 magnesium chelate three times a day. Nature's Sunshine Kotu Kola, a herb for nerves and brain. Two capsules at lunch. another three at tea time. Before this last episode was doing really well. More expensive than prescriptions but reluctant to try any more drugs. Oxynorm possibly made mine worse in hospital and did nothing for the post op pain I was given it for.

[Hidden]

I am back to no rls after stress of dentist etc resolved...

[involuntarydancer in reply to Hidden]

Fantastic. Long may it last. There are many who report good results with magnesium supplements.

[Windwalker]

I started on Maripex and had a ten yr high.I wasn't drunk in the normal sense but had soaring dreams that caused me to believe I was invincible and could give in to every whim. I gambled away as was on the edge of bankruptcy when the mfgr. finally admitted they knew all along that was a side effect of the med. If you can control your urges to gamble, not making any investments, keep all sexual desires at home and be on the lookout for any new compulsions,then Maripex is great until it takes over 4mg to get thru 24 hours. Then it is time to get help

Windwalker

[ShakeRattleRoll]

Over the last decade my Nuerologist and I went as high as 16 mg of Ropinirole then realizing the augmetation issues my doctor perscribed 1 mg Parmipexole to ween me off Ropinorole, but that caused depression, so onto 25-100mg Carbidopal/Levodopa then 3x75mg Pregabalin and 50mg Trazadone. Add that to the 40 mg of Nexium for GERD and I was essetially a lab rat!

I decided to spend Christmas/New Year in misery and cut out every medication in my home. If you have severe RLS as I do you know the spiders that marched up and down my legs/body haunting my waking hours, or were those nightmares, for days on end.

The good news is, I am on the other side. Gone are the daytime attacks, dinners where I can't sit still, the compusion to eat constantly. I've thrown out all the medicines and numerous pill boxes that I had stashed everywhere imaginable. Instead, I'm trying to eat pure foods and cut out sugar and alcohol. I twitch at times after I fall asleep, but hopefully that will diminsh too over time. Regardless, I'm back where I started over a decade ago. My hope now is that perhaps I can become like the other 95% of RLS suffers with mild syptoms that homeopathic medicine can help.

Not suggesting anyone else stop cold-turkey. In fact, in hind-sight I would not do it this way again. It was not the smartest idea to dramatize my body and mind this way, but I was just bone-tired of the norm.