Is your DA causing augmentation?

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.

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Rustsmith
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Re: Is your DA causing augmentation?

Postby Rustsmith » Mon Mar 13, 2017 2:30 am

VeganGal, the original theory was that augmentation was less likely with Neupro. Experience seems to be showing that it does occur. I personally augmented on pramipexole in 12 months and then again on Neupro after about 15 months. I started on 2mg of Neupro, quickly moved to 3mg and eventually was up to 4mg. In my case, rather than wean off of DA I was switched directly to methadone. I also take 900mg of gabapentin to help me sleep and a low dose of pramipexole to control my PLMS.

You might want to talk with your doctor about the combined use of Oxycodone and Klonopin since mixing opiates and benzodiazapines can be dangerous since they are both central nervous system depressants (as is alcohol).
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: Is your DA causing augmentation?

Postby ViewsAskew » Mon Mar 13, 2017 2:37 am

At least two of us have had it happen. Me and Steve - another moderator. I imagine others, I just am not remembering at the moment.

For what it is worth, I went the straight opioid route (nothing else worked) and did have tolerance. I eventually - after several years - started alternating an opioid with a DA. Have been doing so for about 7-8 years and it's worked best of anything. It is a pain to remember what I am taking when, but no tolerance and no augmentation.

A second FWIW, your ferritin level might be improved and reduce risk of augmentation. I need mine around 200 to reduce my meds by about 50%.

Not saying any of these things are right for you - just that there are alternatives that I didn't even know existed - my doc and I made up rules as we went.
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.

badnights
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Re: Is your DA causing augmentation?

Postby badnights » Mon Mar 13, 2017 6:35 am

Part of the problem might have been the 2-month wean. That's pretty long. Most of us prefer to get it over with quickly. It's not like it's only a little worse with a small dose decrease and then stabilizes until we do another little decrease; rather, it goes from tolerable to super-bad after the first or second dose decrease, and we don't stabilize until it's completely out of our system and our bodies have re--set. So prolonging the process prolongs the agony pointlessly.

Depending on if you washed out completely from levo-carb. and Requip before starting new meds, you might still have been augmented from them, and therefore on a higher dose than necessary of the next med, making withdrawal even harder.

Most doctors who aren't familiar with WED hang on to the fantasy that gabapentin or other anti-convulsants will control it in a patient who can't use DAs (like you). Usually they can't.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

legsbestill
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Re: Is your DA causing augmentation?

Postby legsbestill » Mon Mar 13, 2017 5:58 pm

Hi Vegangirl,

I have often wondered if I was particularly unusual - or if my memory of the awful d/a withdrawal period was skewed - but I just today found notes I kept of the period and they are contemporaneous so must be accurate. Anyway, it took me nearly 6 months after coming off pramipexole for my symptoms to really start to settle down.

I don't often post this as I don't want to discourage others who have to go through this awful process.

I was on a fairly high dose of 1.5mg and had been on it for a long time but even so ... after three and a half months I was still experiencing symptoms 24/7, in my whole body and most of the night was spent out of bed as the urge to move was so violent. I got at most 2 hours sleep at night time but most nights I was still up all night (my husband was so worried he considered taking me to a local hospital and asking them to put me in an induced coma!). After about six months my symptoms started to improve quite significantly - my iron levels were rising also - from an initial 29 to 79 and I hope still rising. Now my symptoms are controlled with one evening dose of 2 to 3 g of kratom for the urge to move and a small amount of marijuana consumed in a cookie for nocturnal wakefulness.

I suppose it is possible that you are similar to me and taking longer than average to overcome the d/a withdrawal. I hope so as I am so comparatively lucky to be able to control my symptoms so readily at present.

Rachel

badnights
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Re: Is your DA causing augmentation?

Postby badnights » Wed Mar 15, 2017 9:32 am

Gee legs, I didn't realize you'd been through such a bitter withdrawal. My sympathy! And Vegangirl, let's hope whatever's happening with you is something different!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

peanut1
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Re: Is your DA causing augmentation?

Postby peanut1 » Thu Mar 16, 2017 1:43 pm

My experience with DAs was similar to Ann's experience. The first med I got was ledopa and the worse augmentation ever. Then I went to Gabapentin and I've been using it ever since. I also combine gabapentin with an opiod and that works well too. Methadone is a good med, but hypes you up a bit. I did not try mirapex as I got quite ill and augmented on requip only after 6 days. I still struggle with finding a medication combo that works consistently

Rustsmith
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Re: Is your DA causing augmentation?

Postby Rustsmith » Thu Mar 16, 2017 4:46 pm

peanut1, if you are having issues with methadone hyping your up, you might try playing around with when you take it. My doctor initially told me to take my methadone at bedtime along with my gabapentin and pramipexole. When I started getting RLS breakthroughs in the late afternoon, she moved the methadone to lunchtime.

Now, I can sometimes feel the hyping during the afternoon (when it doesn't matter and can be beneficial) and that part wears off by bedtime. Since methadone has a long half life, it still provides RLS control through the evening when it is needed most.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

peanut1
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Re: Is your DA causing augmentation?

Postby peanut1 » Thu Mar 16, 2017 8:47 pm

I was taking methadone in the morning and one gabapentin and still couldn't sleep. I could try upping the gabapentin or clonazepam. Still nervous to do so as I got 0 hours of sleep on methadone even in the morning. HOWEVER, some of the people here told me hat I was on a very low dose and may need to up the methadone. The question is: would upping the methadone make me even more hyper?

ViewsAskew
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Re: Is your DA causing augmentation?

Postby ViewsAskew » Thu Mar 16, 2017 11:18 pm

peanut1 - so, even with methadone in the morning, you couldn't sleep the next evening? Hmmm. I have no idea if increasing it would help or not.
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.

peanut1
Posts: 273
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Re: Is your DA causing augmentation?

Postby peanut1 » Fri Mar 17, 2017 1:12 pm

Ann,

Yes, I guess I'm a weird case! The good news is there are opioids I can take that do work most of the time. So this is good. there are meds I have not tried like percocet (spelling?)

Kathy

ViewsAskew
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Re: Is your DA causing augmentation?

Postby ViewsAskew » Fri Mar 17, 2017 6:56 pm

Kathy - I find it fascinating that opioids are SO similar, yet I cannot take most of them. The side effects were awful. Like you, I am just thankful that I have found one or two that DO work. And, there are two I haven't tried, so who knows? There may be another, too!
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.

fuz_mind
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Re: Is your DA causing augmentation?

Postby fuz_mind » Mon Apr 24, 2017 10:13 am

HI all

I'm new to the forum and only starting to look through some of the posts.


"Loss of effect of medication as evidenced by a shorter benefit at night and/or relief requires higher doses. Be very suspicious if the higher doses that are required exceed the normally recommended maximum daily dose (0.25mg pramipexole, 1 mg ropinirole and 4 mg for rotigotine)"

Pardon me if this question has been asked before. I have been told by my neurologist that the max therapeutic dose is 4 mg ropinirole, and he became rather upset (out of concern) when I was very reluctant to increase my dose. Is there a paper on the max recommended dose for being 1mg? My neurologist is a rather cerebral guy and it usually helps if I have some guidelines or paper that I can show and discuss with him. Knowledge and information on treatment of RLS is unfortunately rather limited in the country i reside in.

I was diagnosed in Feb 2016 after experiencing 3 years of pain and tons of tests and scans;
I was first started on 0.25mg ropinirole, together with clonzapam and tramadol in end March 2016.
Currently I am on 1.25mg of ropinirole, 0.5-1mg clonzapam and tramadol to be taken PRN; on bad evenings/nights, I have taken up to 200mg of tramadol.

My neurologist thinks that it is a natural worsening of the RLS as opposed to augmentation....

Polar Bear
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Re: Is your DA causing augmentation?

Postby Polar Bear » Mon Apr 24, 2017 4:35 pm

fuz_mind - You are correct in that many of what are considered the 'leading experts' in the field of RLS now consider 1mg ropinerole to be the maximum daily dose. When ropinerole first appeared the max daily dose was 4mg and it's possible that officially it still is considered to be 4mg by those who are not familiar with its side effects and with augmentation.

Indeed I maxed at 4mg daily before this was considered to be too much and I'm still on this same dose.
You are now taking 1.25mg ropinerole and should not go any higher, it would be great if you could reduce down to the 1mg.

This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor. It is my RLS Bible and my GP is willing to be guided by it. Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

I quote from this book page 164 with regard to Ropinerole.
THE FDA - APPROVED MAXIMUM DOSE IS 4MG BUT AS DISCUSSED ABOVE ........... NOT EXCEEDING 1MG PER DAY MAY REDUCE THE ODDS OF SIDE EFFECTS.
Augmentation is a side effect.
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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Re: Is your DA causing augmentation?

Postby ViewsAskew » Mon Apr 24, 2017 8:48 pm

Just my opinion - your neuro is wrong. Those with the most knowledge suggest this rule of thumb - if worsening occurs within 2 years of starting a DA, then the DA is at fault. You have had multiple increases in one year.

There is also a paper written by Dr. Buchfuhrer; here is a link to a page with a link to that paper. viewtopic.php?f=5&t=6532&p=61601#p61601
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: Is your DA causing augmentation?

Postby Polar Bear » Mon Apr 24, 2017 9:30 pm

This is an extract from the paper of Dr Buchfuhrer as per ViewsAskew's post above.

""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.""
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


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