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.
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involuntarydancer
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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.
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.
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 ...
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.
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.
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. ?
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.
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.
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.
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.
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.
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
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