going from ropinerole to gabapentin

Use this forum to discuss any issues associated with Augmentation
canton
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going from ropinerole to gabapentin

Postby canton » Sun Jan 14, 2018 2:10 am

My problem is both RLS and PLMD with leg pains- which I experience beginning as early as afternoon. On the advice of a JHU doc, I am in the process of reducing my ropinerole to zero, then 2 weeks at none, before going to gabapentin, increasing dose to 6 300mg a day. It has been a very difficult process and I am only 1/2 through the reduction. One of the hardest parts is the awful depression that happens when the pain and problems begin. I know lots of you have done this. I would appreciate any suggestions on how to survive this process. Is there any suggestions of what helps to get through this? How long does it take for any of the symptoms to reduce? Also how does this dosage of gabapentin work for severe cases? Does it help with the PLMD ? or the leg pain?

Thanks for any suggestions.

canton
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Re: going from ropinerole to gabapentin

Postby canton » Sun Jan 14, 2018 2:41 am

Forgot to add to my previous post. I am also taking Horizant. I was even up to 2 a day, but now just the 5 pm one. I can't say that it does much. And it is very expensive. I also tried the Neupro patch which seemed to help but ended with very swollen ankles.

Rustsmith
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Re: going from ropinerole to gabapentin

Postby Rustsmith » Sun Jan 14, 2018 3:00 am

Canton, I cannot help with your withdrawal from ropinerole because I went directly from pramipexole to methadone. But, something doesn't sound quite right here. Does your doctor at Hopkins who recommended going onto gabapentin know that you are taking Horizant? Horizant is a modified form of gabapentin that maximizes adsorption from the intestines into the blood stream. Once Horizant is in the blood stream, it converts to gabapentin. So, by taking both gabapentin and Horizant, you are essentially doubling up on the same medication.

And, FYI, the reason why some people have to use Horizant is because gabapentin is not always well adsorbed in the intestines. So, for some people any extra gabapentin simply passes right through them. Horizant was developed to increase the amount of drug that actually gets into the blood stream.
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.

badnights
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Re: going from ropinerole to gabapentin

Postby badnights » Sun Jan 14, 2018 8:58 pm

The best way to get through, if your doctor insists on a slow taper without opioid support, is to cease expecting anything of yourself. Take time off work, and concentrate on treating yourself well and getting through the day. Sleep when you can, eat properly, and expect nothing else, because you will have nothing else to give.

Keep in mind that your symptoms during this withdrawal will become much worse for a while, then - about 3-5 days after your last dose - will become better. You will be able to sleep again. I personally feel a cold-turkey quitting is better because it shortens the time of agony, whereas a long, slow taper starts the agony at much the same level and lets it last for longer. I don't think that's true for everyone - some people feel good about their tapers - but a lot of people feel the taper just prolongs the agony. Up to you and your doctor to agree on. The main point to remember, to help you through this, is that your symptoms WILL get better, beginning a few days after your last dose. Much better.

If you are susceptible to depression, or feeling depression now, be sure to tell your doctor. Gabapentin can exacerbate existing depression or trigger mood swings, suicidal ideation, or even suicide in susceptible people. Horizant, or gabapentin encarbil, is as Steve has explained a prodrug of gabapentin: it turns into gabapentin once it's been absorbed into the body. So - you're already taking a medication known to trigger depression in some people.

If your doctor knows you're taking Horizant, is he planning to switch you to gabapentin? Gabapentin is cheaper but its effect is much more erratic because of the absorption problems.

You say the Horizant isn't helping much at the moment, so you even reduced the dose to help with the side effect of swollen ankles. I Can't speak to the side effect, but I will mention that your symptoms right now are likely much worse than your baseline, medication-free symptoms, because the ropinirole has likely augmented your symptoms - I assume that's why you're posting in this Forum. So once the withdrawal is over, the Horizant (or gabapentin) might be more effective.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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canton
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Re: going from ropinerole to gabapentin

Postby canton » Sun Jan 14, 2018 10:20 pm

Yes the JHU doc was aware of the Horizant. He felt that it took so long to get into the system that plain gabapentin with more doses would address the symptoms quicker.
My main concern is that gabapentin will not address the symptoms. I don't know what I can do it that happens.

legsbestill
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Re: going from ropinerole to gabapentin

Postby legsbestill » Sun Jan 21, 2018 12:56 pm

Badnights is spot on. Expect nothing of yourself. Once the process is over you will know that you could endure torture if you had to. That said, I brought boxes of stuff into my bedroom and set up a sorting post with a camping table and sorted through loads of rubbish that had accumulated in the house, usually while standing because the rls was so bad. I also developed a stretching/yoga regime which was soothing. By the end it took nearly 40 minutes because I kept adding more stretches into it but I do a modified version now that only takes about 10 minutes and is less daunting to embark on if I am up in the night. By the end of the withdrawal process, I was surprisingly trim and flexible as a result!
I actually can't remember what I did during the day though - it is a dark place in my mind that I would rather not revisit. I remember my children (late teens) looking at me in concern as I sat (squirmed) at the kitchen table and it seemed that their faces were far away - as though they were looking at me through a tunnel - and I can't remember anything else about it.
It is a traumatic process and sometimes, when I think how casually some health professionals lead us to the point where we have to undergo it, I do wish that they could experience 24 hours of what withdrawal from a dopamine agonist is like.

badnights
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Re: going from ropinerole to gabapentin

Postby badnights » Mon Jan 22, 2018 8:11 am

It is a traumatic process and sometimes, when I think how casually some health professionals lead us to the point where we have to undergo it, I do wish that they could experience 24 hours of what withdrawal from a dopamine agonist is like.
yes!
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

ViewsAskew
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Re: going from ropinerole to gabapentin

Postby ViewsAskew » Thu Jan 25, 2018 8:38 am

badnights wrote:
It is a traumatic process and sometimes, when I think how casually some health professionals lead us to the point where we have to undergo it, I do wish that they could experience 24 hours of what withdrawal from a dopamine agonist is like.
yes!


I absolutely endorse this. If only I knew how to spike their tea with a dose of 24 hour DA withdrawal when augmented!
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.

canton
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Re: going from ropinerole to gabapentin

Postby canton » Sat Feb 03, 2018 8:54 pm

I made it through the ropinirole taper. I did use some saved pain meds to make through about a week. I had mean thoughts of the doctor who set this up without giving any pain meds to help. The pain and depression were unbelievable. BUT then I was to just go off the Horizant for 2 weeks with no help. This resulted (after 4 days) in awful chest pains and the blackest depression with death wishes. At that point I felt I was at the bottom of what I could take and began a single dose of gabapentin. This immediately lifted the depression. I did not realize before hand that going off Horizant was going to be so awful and was not warned of this.

Today I am making it on one or two 300mg of gabapentin at night. My problem seems to be almost entirely PLM. RLS has not really happened.
I decided to try for a more local RLS doctor and have made an appointment at Emory.
Here's hoping it all works out.

badnights
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Re: going from ropinerole to gabapentin

Postby badnights » Sat Feb 03, 2018 10:01 pm

You might want to tell your doctor about the depression and its relation to gabapentin. Gabapentin carries a warning that it can cause depression and even suicide in susceptible people. It caused severe mood swings in me if I took it even slightly late, and eventually it caused episodes of profound depression and suicidal ideation.
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

canton
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Re: going from ropinerole to gabapentin

Postby canton » Sat Feb 10, 2018 12:40 am

I am now on gabapentin. Two weeks so far. Amazingly I only need one 300 mg pill at bedtime. The RLS I had during augmetation is gone and also the leg pain. Now I have PLM mostly at night and rarely during rest or nap. I am slowly adjusting to the gabapentin; fatigue and low appetite seem to be the major problems. My blood pressure seems a bit high but is slowly going down.
I feel like I have lived through a nightmare and finally awoken to a new day.

badnights
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Re: going from ropinerole to gabapentin

Postby badnights » Sat Feb 10, 2018 9:00 pm

What a relief when augmentation is over! You seem to be doing very well, all considered. I am happy for you :)
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

twitchy
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Joined: Sun Jul 01, 2018 8:09 pm

Re: going from ropinerole to gabapentin

Postby twitchy » Sun Jul 22, 2018 8:27 pm

Thank you for this post! I decided to slowly go off ropinerole when augmentation started making me twitch during the day. I talked to my doctor about it and asked how he could help me get off it more easily, and guess what his reply was? Take more ropinerole! By God's grace I saw this forum and a woman posted that the dose my doctor recommended was what caused her to experience worse augmentation, including twitching in the arms! So, I am on my own plan of gradual reduction. I am down from 2mg to about 3/4mg. I max 5 hours of interrupted, miserable sleep. I think after reading this I'll go cold turkey. I love the standing and filing idea! And so appreciate the thought that it'll be over within 5 days. Thanks again!


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