Changing Drugs

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Polar Bear
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Location: N. Ireland

Re: Changing Drugs

Post by Polar Bear »

Corrie - very similar...

rthom - I don't know about advertising - whether it's good or bad.
I guess I might have learned sooner about ropinerole/requip....
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

veldon7

Re: Changing Drugs

Post by veldon7 »

I'm glad you mentioned the fact that PLM's don't respond as well to opiates. I was thinking that the 10mg of Oxy. didn't do much for me. I have PLMD more than creepy crawly feelings. I went to my pain Dr. Monday and he changed the Percocet to Oxy 10 mg. I asked him if he would because I didn't want the Tylenol. So far, I am still having to take the .5 of Pramipexole. The oxy helps some, but not enough to make it through the night. He also wants me to take more of the Gabapentin, I was only taking 100 mg at bedtime, but I am suppose to take it up to three times a day. He said that I should get use to it after a while and not be as drowsy. I said I don't know about that, I already have a hard time staying awake to drive.

mistral27
Posts: 8
Joined: Sun Sep 08, 2013 9:56 am

Re: Changing Drugs

Post by mistral27 »

Guys,
Many thanks for your replies. I see my neurologist tomorrow but my gut feel is that he will want me to switch to praximole.
I now am pretty sure that will be wrong.
I will advise him of the book and the anecdotal evidence.
May I ask where I can find the advice that 4mg ropinrole is no longer the recommended max and 1.5mg is?
Also has the praximole max also been reduced?

thankyou

Polar Bear
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Location: N. Ireland

Re: Changing Drugs

Post by Polar Bear »

I have seen it discussed here but haven't seen anything 'official'.

Perhaps another member will be able answer this.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

veldon7

Re: Changing Drugs

Post by veldon7 »

Well if the Neuro. does say to try Mirapex, just stay on a low dose and you should be ok. I have been on .5 mg for years and other people still take it or rotate it with opioids. I think the max does for Mirapex is .75. Good Luck! :)

ViewsAskew
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Location: Los Angeles

Re: Changing Drugs

Post by ViewsAskew »

Review the posts on Dr Buchfuhrer's site - rlshelp.org. It's also in the new book, I bvelieve. I think Beth posted what it said in the last two weeks ( badnights is her user name). Look through her posts and you'll likely find it. - Have to run so can't look for it.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Changing Drugs

Post by Polar Bear »

http://www.mayoclinicproceedings.org/ar ... 4/fulltext
This is a document that I had saved to my favourites but hadn't thoroughly read it.
It is Mayo Clinic Revised Consensus Statement on the Treatment of WED/RLS and it is dated September 2013.

Here is an extract from it - under the heading of Chronic Persistent RLS/WED - Medication.

Pramipexole is usually commenced as 0.125 mg once daily, taken 2 hours before major RLS symptoms start. The dose is increased by 0.125 mg every 2 to 3 days until relief is obtained. Most patients require 0.5 mg or less, and patients taking higher doses should be carefully monitored for adverse effects, especially augmentation (see later herein). Experts differ on an acceptable maximum daily dose, but most agree that this should not exceed 0.75 or 1.0 mg. Ropinirole is usually commenced as 0.25 to 0.5 mg taken 1.5 hours before major symptoms start and is increased by 0.25 to 0.5 mg every 2 to 3 days. Most patients require 2 mg or less (note that 4-times higher equivalent doses are needed compared with pramipexole), but total daily dosages up to 4 mg may be needed. Some patients require twice-daily doses of oral agonists, with an earlier dose in the late afternoon or early evening and a second dose before going to bed.

This document is dated September 2013 and yet it still refers to the dosage of ropinerole as ok going up to 4mg total daily dose.

I have ordered the new edition of Dr Bs book but it hasn't yet arrived.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

cornelia

Re: Changing Drugs

Post by cornelia »

I find that strange too PB. They probably stick to the old maximum doses of the DA's because basically there is nothing wrong with these as long as you don't augment (and there are still patients who never do). So they can't say that these doses are absolutely incorrect.

It's the experts with large practices of RLS patients who forsee and have seen the danger of larger doses for lots of patients and want to stay on the safe side as research has shown that possibly there is a greater chance of augmentation on higher doses.

Must be something like that, but I might be mistaken.
Corrie

mistral27
Posts: 8
Joined: Sun Sep 08, 2013 9:56 am

Re: Changing Drugs

Post by mistral27 »

What a meeting I had!!!! Cost $200 for 3 mins of wonderful advice.

"There is no solution I know of, I cant help you any more"

but how about a holiday taking opioids, says I.

"It could work but they are restricted drugs that I can't prescribe"

GREAT!!!!!!!!!!!

So now I will see my psychiatrist who also is a director of a private psychiatric hospital specialising in substance abuse, anxiety and depression.

I know he uses methadone so maybe he can help

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Changing Drugs

Post by rthom »

That's aweful

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Changing Drugs

Post by Polar Bear »

mistral27 - That is so unfair. $300 to say.... I can't do anything for you !!
I think perhaps a little discretion regarding the billing might have been considered.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Changing Drugs

Post by ViewsAskew »

It is so depressing when that happens - charged all that money and no assistance - not sure which is worse - not being helped or paying that much.

Do consider complaining to billing. I did the last time this happened to me - and they did remove the charge. I know it might now happen, but it may be worth a try.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

veldon7

Re: Changing Drugs

Post by veldon7 »

I have had that happen with two different Neuro's. It's such a waste of money!! I am going to a pain Dr. for my neck and legs, You could try that, although the Oxy 10mg doesn't do alot for me, I have PLMD.

Polar Bear
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Posts: 8009
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Changing Drugs

Post by Polar Bear »

mistral27
May I ask where I can find the advice that 4mg ropinrole is no longer the recommended max and 1.5mg is?
Also has the praximole max also been reduced?


I have this advice in the document ''Strategies for the Treatment of Restless Legs Syndrome'' by Dr Buchfuhrer.
I think I just printed it out from a link here on the discussion board, it is not saved to my bookmarks. drat !!

it is 4am here in UK and I'm not up to doing the search but this is the text from Page 780 under the heading ''Daily RLS''
""""Due to the 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."""""
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: Changing Drugs

Post by badnights »

May I ask where I can find the advice that 4mg ropinrole is no longer the recommended max and 1.5mg is?
Also has the praximole max also been reduced?


Click on second link below my name (signature below this post). There is a link to download Buchfuhrer's 2012 paper, which has this info; the relevant part is copied below. The Clinical Management etc book also has similar recommendations, if you can get hold of a copy of it.

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 FDAapproved,
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.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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