How can I Avoid 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.

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.
Stainless
Posts: 105
Joined: Tue Dec 01, 2015 9:30 pm

How can I Avoid Augmentation?

Postby Stainless » Tue Feb 02, 2016 4:33 pm

I’ve been on Ropinirole for a week and it has been a miracle drug for me. Within an hour my RLS disappeared for 22 hours, a full 24 the next night and almost two days the third. My severe insomnia also vanished. Research and advice convinced me to contact my doctor and lowed the dose from 2 to 1 mg and I continue to get 24 hour relief with some mild RLS. The more I read the more I come to realize this window may close.

I just went through six months of hell getting off 20 years of Clonazepam and reading the posts it seems DA withdrawal is just another nightmare. Even two months off Clonazepam I still have withdrawal hallucinations but it is nowhere near what it was. I’m just not sure what daily feelings are withdrawal and what are from Ropinirole.

I went for three weeks on nothing but supplements before I started Ropinirole. I felt like I was getting healthier every day but had severe 24 hour RLS. I did not see staying on nothing working out. I had to petition my doctor to try Ropinirole as she would rather I take Gabapentin which I took to help get off Clonazepam. I thought I had augmented on Gabapentin because it quit working the last month of tapering off Clonazepam but am told that could not happen. I think this is my doctor’s position.

I think I am at a time that I could try going back off Gabapentin and stop Ropinirole without too much discomfort if the Gabapentin works. If it works, great, then that is the solution. My window may be closing to get off Ropinirole without pain.

I just read Rustsmith’s post on augmentation and learn a little more every day. Let me pose a few questions on my situation and see what the community thinks.

Does anyone not augment on DAs?

Are there options that I can start now to keep from or reduce augmentation?

I never had 24/7 RLS or insomnia on Clonazepam or 20 years ago. Could this just be part of withdrawal? Could this be the new normal? Have people seen this significantly reduce?

Does anyone get the relief on Gabapentin that Ropinirole offers?

Thank You for your input. Rick

ViewsAskew
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Re: How can I Avoid Augmentation?

Postby ViewsAskew » Wed Feb 03, 2016 8:25 am

only have a moment.

First, make sure you have your serum ferritin as high as you can - at least 75, better if 100 or more.

Second, alternate. Everyone augments eventually, it seems, if they stay on the drug long enough. It's a tough sell to a doctor, but this seems to work exceptionally well.

Third, don't take it.

That's all I can think of.
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.

Stainless
Posts: 105
Joined: Tue Dec 01, 2015 9:30 pm

Re: How can I Avoid Augmentation?

Postby Stainless » Thu Feb 11, 2016 2:02 pm

It seems to me that the future of fighting RLS is for new sufferers to know what they are getting into and for people changing prescriptions to know the ramifications. Waiting for the pharmaceutical companies to come up with a cure and then being able to come up with insurance that will pay the bill for the overpriced drugs is a long shot. Gabapentin Enacarbil is approved for RLS but I have to take non approved Gabapentin because my insurance pharmacy refuses to pay the exorbitant price for Enacarbil. At the same time the CEO of my mail order pharmacy Prime Mail is listed as one of the top ten paid CEOs in the country.

After quitting 20 years of clonazepam, that worked very well for me, I quit because of increased risk of Alzheimer’s. Since that and the associated withdrawal my life has been turned upside down. Free of that I tried Levodopa Carbidopa and Pramipexole with bad side effects and even taking nothing for two weeks to understand my current state.

Now I am on Ropinerole that seems to work for now but am trying to understand options if I augment. Most people here will say “when I augment” but the studies I have found because of this site imply about half of the people go on for even decades on this medicine. I would take a little higher dose than 1 mg. but now fear that will trigger augmentation. I am now also taking a little Gabapentin per my doctor but it does not seem to help and I wake up with a headache. I know my doctor would prefer me on that but it does not seem to have the magic affect that Ropinerole has.

I appreciate and understand View’s input an am just bumping this thread to see if there is any more interest in this subject.

Polar Bear
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Location: N. Ireland

Re: How can I Avoid Augmentation?

Postby Polar Bear » Thu Feb 11, 2016 4:35 pm

It does appear to the consensus that when on a DA i.e. Ropinerole or Pramipexole, we are very likely to augment. Your dosage at a little higher than 1mg is just above the recommended daily dosage. When I started on Ropinerole the max daily dose was deemed to be 4mg.... and I'm still on that. It is hard to tell where I sit on any augmentation scale as my symptoms were 24/7 before starting medication, and also Ropinerole never ever seemed to do the job by itself and so I also take cocodamol, the combination provides some success.

I've never used Gabapentin and can't comment on using it, however, you say you are 'taking a little Gabapentin'. Gabapentin side effects take some time to settle. Also a 'little' may be too little and not sufficient for relief. You may need to gradually titrate upwards to get to a sufficient dosage.

This book is worth having, it is easy to read, and can be used for discussion purposes with your doctor. I mention this book often because it is so helpful.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the 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.

ViewsAskew suggested in an earlier post that you should check on your ferritin serum level. This is very important, especially if using a DA.
It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.
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

Stainless
Posts: 105
Joined: Tue Dec 01, 2015 9:30 pm

Re: How can I Avoid Augmentation?

Postby Stainless » Fri Feb 12, 2016 2:12 pm

Thanks PolarBear! I have the book and have had the ferritin test. I did not get the number but will when I see doctor next month. I got an iron supplement to see if it helps until then.

I'm having success with 1 mg. Ropinirole but get varying degrees of RLS in the evening.

I tried 4 mg. Gabapentin last few days but it gave me a headache I associate with having taken it. My doctor GP wants me to try the Gabapentin again and I know it would be good to have a second avenue that works. I understand titrating up and having a sustained dose.

If anyone is having success with Gabapentin and reads this chime in. Also anyone knows an experienced RLS Neuro in central Florida let me know. I think for now I will enjoy that Ropinirole is working until I see the doctor again.

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Re: How can I Avoid Augmentation?

Postby Sojourner » Sat Feb 13, 2016 6:48 am

Stainless wrote:Thanks PolarBear! I have the book and have had the ferritin test. I did not get the number but will when I see doctor next month. I got an iron supplement to see if it helps until then.

I'm having success with 1 mg. Ropinirole but get varying degrees of RLS in the evening.

I tried 4 mg. Gabapentin last few days but it gave me a headache I associate with having taken it. My doctor GP wants me to try the Gabapentin again and I know it would be good to have a second avenue that works. I understand titrating up and having a sustained dose.

If anyone is having success with Gabapentin and reads this chime in. Also anyone knows an experienced RLS Neuro in central Florida let me know. I think for now I will enjoy that Ropinirole is working until I see the doctor again.



Sorry you are going through a rought patch right now.

I am on my second go-round with gabapentin. It worked well for many years but then stopped working--by then I was up to 2400mg which was as far as my doc wanted to go and about as far as you would want. I had very few side effects other than for the first week or so (a bit foggy). I would welcome the dwowsiness that people experience with gabapentin but I had none of that. I tried Lyrica after the gaba. Lyrica worked well but I developed an unwanted side effect so am trying to cycle back through the gaba with the help of hydrocodone. Don't know if the Horizant would work or not but have the same trouble with insurance covering it as you experienced so that is on the back burner for now and pending a neurology consultation. So, for me the gabapentin worked quite well or was extremely helpful. Your post mentioned 4mg or gabapentin. That seems like an extremely low dose and I guess I wasn't aware of it coming in that small a dose. I thought perhaps you meant 400 mg.

Best of luck.

Wishing all who visit here some peace this night.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

Stainless
Posts: 105
Joined: Tue Dec 01, 2015 9:30 pm

Re: How can I Avoid Augmentation?

Postby Stainless » Sun Feb 14, 2016 8:45 pm

Yes Sojourner, 400 mg. Gabapentin. I've taken as much as 900 mg. but I was in the middle of Benzo withdrawal so I was not sure how much it helped. It was a very confusing time.

I was watching the recent RLS.org video and they talked about Gabapentin being used to reduce the pain of RLS but I never experience what I would call pain, just extreme discomfort. For me there is a difference.

The Ropinirole is working very well today, though one day I will probably have to deal with augmentation. The video described very well how this DA gave me immediate relief during a very rough time. Any input on how to deal with augmentation are greatly appreciated. Thanks

Rustsmith
Moderator
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Location: Pueblo, Colorado

Re: How can I Avoid Augmentation?

Postby Rustsmith » Sun Feb 14, 2016 11:07 pm

Stainless, "pain" can mean a variety of things and is not simply limited to the term that most of us would associate with things like cuts and bruises. My wife received it for neuropathy due to MS, which she described as being similar to the pins and needles feeling we all get when a hand or foot goes to sleep. I have heard a doctor define pain as an inappropriate neurological response to a stimulus.

I take gabapentin, but as a treatment for the insomnia side of RLS. I do not find that it has any effect on the "pain" sensations on the few occasions when I have them. FYI, I am currently taking 900mg of gabapentin each night just before bedtime and find that it usually allows me to fall asleep rather quickly. Unfortunately, it does not allow me to stay asleep all night.
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.

Yankiwi
Posts: 356
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: How can I Avoid Augmentation?

Postby Yankiwi » Sun Feb 14, 2016 11:58 pm

After augmenting on .62mg ropinerole (2.5 tablets) after only a few months taking it I gradually cut back to one tablet two hours before bedtime. Currently I'm taking half two hours before and half one hour before bed. Ropinerole allows me to get to sleep. I have given up trying to sleep through the night and, in fact, embraced getting up. Currently I read for about a half hour, standing and stretching while reading. After a half hour my legs have usually settled down and I'm tired enough to get back to sleep. I usually manage 6 - 7 hours of sleep and am happy with that. I sometimes have symptoms late in the evening before bed which requires me to walk, shake my legs, stretch, anything to make it go away.
For enforced confinement I take 60mg codeine which also helps me sleep that night.
I think, to avoid augmentation, the Holy Grail of a full night's sleep needs to be abandoned. I still hate getting up in the night but know I need to. Staying in bed once the twitching starts just leads to severe pain and I have to get up eventually anyway.


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