Movement Disorder Specialist--Really?

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rvjimzhr1
Posts: 93
Joined: Thu Mar 16, 2017 7:46 pm
Location: Medford, OR

Movement Disorder Specialist--Really?

Post by rvjimzhr1 »

Two years ago in early 2018 I had just gone through a "self withdrawal" from Requip after severe augmentation. I was then able to see a local Neurologist who was pretty familiar with RLS. Through him I briefly tried Lyrica with poor results. Then we tried Gabapentin which worked pretty well but he suggested Horizant and I tried it, at my own great expense, for several months before getting the local VA to provide it. After a few more months on Horizant it seemed to me that the Gabapentin had actually worked better and I switched back to that. It's worked very well ever since. When it doesn't work so well I vape cannabis flower which "does the trick".

Within a year my Neurologist left the area and I've tried unsuccessfully to find another Neuro who seems to understand RLS. Sadly none seem to exist in my local area. At recent VA annual the doc asked me about my Gaba and how it's working. She knows much less than I about RLS and I asked her how we would handle, down the road at some point, the Gaba becoming less and less effective as I am uncomfortable upping my dose in that event. She told me she'd refer me to a regional VA facility specialist and one would call me.

WOW! Excited about that and a week or so ago I received a call from a "Movement Disorder" physician. He asked me to describe my experience with RLS so I gave him history of many years with no relief, then Carbidopa-Levadopa up to augmentation, then VA prescribed Requip for a couple of years til augmentation, then my withdrawal and finally finding the Neuro and being on Gaba. I told him my concerns about Gaba becoming less effective. His first comment was about small doses of opioids and methadone! Man was I surprised as I've heard so much about how difficult/impossible it is to find someone to go the opioid route. I thanked him for that option, if it would become necessary. THEN he told me of another drug that I could try.......Requip XL. I asked him about it and he said it is a time release version of Requip just like Horizant is a time release version of Gabapentin. I take 1800mg of Gaba daily in the evening. He told me that if I feel I need more then I could up the dose to 2400. He told me he'd check back with me in a year and if I had questions or problems before then I could call him.

So I was very excited to find this 'specialist' but when he suggested Requip XL I felt like he hadn't heard anything I had said about being on Requip and augmenting on it. From what I read online, Requip XL IS NOT used for RLS, just Parkinson's. I like what he said about the opioids but question that he would suggest the XL.

My concerns......Am I correct about both Requips being as "nasty" as I think? Can I expect that my Gaba will cease to be effective in the future? Will the next VA doc in the future be as willing to provide an opioid as this person seems to be.

Jim

ViewsAskew
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Re: Movement Disorder Specialist--Really?

Post by ViewsAskew »

I am not familiar with it, but I'd guess the theory is that having a smaller amount circulating ALL the time, rather than a large bump at one time, is the reasoning - like Neupro/rotigotine (a patch). Fewer people augment using rotigotine, as I understand it, but you absolutely can. I did. BUT - it very well could be that it gets you another couple years before you have to go to the opioid route.

FWIW and as an aside - iron infusions have made a huge difference for me regarding the DAs. I would augment in about a week prior to them. I just finished an 8 months stint using pramipexole without any issue. I also use methadone, using both keeps the dosages of both lower and reduced side effects. I stop it for a couple weeks (the pramipexole), then start it back up. Been doing that for about ten years, I'd guess. For me, best of both, with a reduction of what makes both problematic for me. My only point is that 15 years ago, I'd have said DAs would NEVER work for me and I'd never take them and I'd question the sanity of anyone who suggested it. Yet, here I am!
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.

Rustsmith
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Re: Movement Disorder Specialist--Really?

Post by Rustsmith »

If you think that Horizant was expensive, don't look at the price of Requip XL. Like Horizant and the Neupro patch, it is still under patent protection and is not available in generic form. It is very expensive and as you suspected, it is very similar to regular Requip except that it is supposed to last throughout the day, which is probably more important for Parkinsons than it is for RLS since RLS is primarily a nighttime problem.

As for having to increase the dose of gabapentin with time, gabapentin isn't like Requip where you will gradually need more to provide counter the effects of augmentation. You may need a higher dose in the future, but that would be more likely due to an increase in the severity of your RLS than it would be a reduction in how well the gabapentin is working. The "problem" with gabapentin is that many people simply don't benefit from higher doses because they cannot absorb the added dose into the blood. That is why Horizant was developed.
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.

QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Movement Disorder Specialist--Really?

Post by QyX »

I had long acting dopamine-agonists in the past. It was extended release pramipexole and in theory extended release dopamine-agonists like Requip XL can be helpful in delaying augmentation from dopamine-agonists. At least this effect could be demonstrated with the Neupro patch so it seems reasonable that the same applies for long acting / extended release vs. short acting / fast release dopamine-agonists.

So his suggestion is not that bad in the context of your situation because right now, you seem to be able to do well on Gabapentin alone. So when things might get worse, maybe all you need is dopamine-agonists on an irregular basis, maybe on average 2 to 3 times per week and sometimes even phases where you don't need them at all. Additionally, given your knowledge about augmentation, should it happen again, your certainly would be able to discover this early and discontinue dopamine-agonists before it becomes a real problem again and then just switch to opioids.

I think it is a great having a doctor giving you options.

Also: when your insurance is not covering the drug, you would have an easy way out, especially considering that you already augmented.

And sadly opioids have their issues, too. For so many opioids cause alertness / insomnia.

I think want to quote from Ann from above, because the way she does it, it is just perfect. All the drugs substitute each other and it really helps to keep the overall dose low.
FWIW and as an aside - iron infusions have made a huge difference for me regarding the DAs. I would augment in about a week prior to them. I just finished an 8 months stint using pramipexole without any issue. I also use methadone, using both keeps the dosages of both lower and reduced side effects. I stop it for a couple weeks (the pramipexole), then start it back up. Been doing that for about ten years, I'd guess. For me, best of both, with a reduction of what makes both problematic for me. My only point is that 15 years ago, I'd have said DAs would NEVER work for me and I'd never take them and I'd question the sanity of anyone who suggested it. Yet, here I am!
Oh! Cannabis is also a good option to treat RLS if available in your state. Cannabis works especially well when combined with opioids and can relief even the worst and most painful RLS symptoms.

And for now, you at least now know that you have a doctor who is willing to go the opioid route if it becomes necessary.

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

Re: Movement Disorder Specialist--Really?

Post by Stainless »

I'd consider myself lucky if Gabapentin works well for you long run. I think it is about the most benign of the drugs used to treat RLS. I was on Requip XL for a year and it was a horrible, the lost year of my life. A little bit of codeine and I'm all bound up so I can't imagine what a real opiate would do. I use it only on a really bad night. I make brownies but they just get me stoned while I feel like hypodermic needles are stabbed into my thighs.

My advise would be keep the meds to a minimum. Gabapentin and Flowers sounds great to me. Best of Luck Jim!

rvjimzhr1
Posts: 93
Joined: Thu Mar 16, 2017 7:46 pm
Location: Medford, OR

Re: Movement Disorder Specialist--Really?

Post by rvjimzhr1 »

Thanks folks for all your comments and the moral support! Yes, it's great to have options and I feel much better about the VA doc than I did when I wrote. And, as usual, it's great to be here on this forum with so many helpful people.

Jim

Dr. Grammy
Posts: 19
Joined: Tue Aug 16, 2011 9:16 pm

Re: Movement Disorder Specialist--Really?

Post by Dr. Grammy »

@ Stainless: You mentioned getting "all bound up" on codeine. Just thought I'd mention that a laxative called Movantik was designed for people taking any sort of opioid. My gastroenterologist prescribes it, and it works wonders.

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