Drug Holiday

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fruckman
Posts: 4
Joined: Tue Jul 21, 2015 5:01 pm

Drug Holiday

Post by fruckman »

I am one week into a "drug holiday" as prescribed by my neurologist (who is new to RLS drug holidays).
Here is my background:
66 year-old male
Periodic mild RLS symptoms for 20+ years (sometimes no symptoms for weeks; seldom lost sleep)
2.5 years ago, experienced sudden onset of unbearable symptoms and loss of sleep for 4-5 days.
Internist prescribed 1mg Requip at that time.
Now have daily symptoms, and experiencing augmentation.
Internist wanted to prescribe higher dose of Requip. I resisted. He referred me to Neurologist at Barnes Sleep Center.
Neurologist added 200mg Gabapentin and checked ferritin level.
Ferritin was 40. Through iron supplements, have increased to 125.
Note: likely have had low ferritin for years as I have IGA Nephropathy which results in microscopic loss of blood in urine
Symptoms are now more bearable, but augmentation continues. Usually wake early morning with symptoms.
Discussed “drug holiday” with neurologist. He went along with it and suggested waning down the 1mg Requip by .25mg per week (.75/.50/.25/off in 3 weeks)
I have successfully completed the first week at .75 with very little negative effects, and start .5 dose tonight.
I’m concerned that these next waning steps will be more difficult as each represents a greater percentage reduction, and I’ve not been prescribed opioids to help.
I WANT THIS TO BE A SUCCESSFUL DRUG HOLIDAY as I believe I might do well without Requip given the correction of my low ferritin level.
Any suggestions that might aide in my success?
For example, might it be helpful to lengthen each waning period from one to two or more weeks?
Or, might it be helpful to halve the .25 pills so that each future waning step is just .125 rather than .25 (that is, from .75 to .625, .50, .375, .25, .125, then off in 5 more weeks).
Thank you!
FLR

Polar Bear
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Re: Drug Holiday

Post by Polar Bear »

I have tried about 3 times to reduce my Reuip which is 4mg daily spread over the 24 hours, each time unsuccessfully. I was trying on my own.

Well done for standing your ground and not increasing your dosage.

I think you will continue to suffer from symptoms until the Requip is completely out of your system which could be 3, 4 or more weeks following cessation.
And whether you taper as you are, reduce more slowly, or go cold turkey, the medication has to be ceased, then withdrawal ... for the said 3, 4, or more weeks.
How you do it depends a lot on your circumstances, whether you have work commitments and responsibilities that must be met.
Perhaps you could be fortunate and withdrawal would be quick for you. 1mg is not such a heavy dose of Requip compared to what was considered ok just a few years ago, such as the 4mg that I take.

Members have been successful with their drug holidays and I'm sure someone will be along soon who has done what you are about to do.

Congrsts on getting your ferritin up.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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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Location: Los Angeles

Re: Drug Holiday

Post by ViewsAskew »

My opinion? You're at a low enough dose, just stop. It's just going to prolong your misery by decreasing slowly. At this dose, you're not a candidate for DAWS if you stop suddenly, so why prolong it? It really won't get better, I don't think. And, in 5-10 days, the worst will be over. It will take another 2-8 weeks, most likely, to really know what's going on, but after ten days off, you can try another drug, such as gabapentin or gabapentin encarbil.

I couldn't get through it when I tried. But, I also didn't know that research seems to show it's consistently better around day 10. I got to day 5 and no one here had done it (this was years ago), so, I gave up. I finally got through it with an opioid. I'm not convinced that one way is better than the other. Seems that using an opioid, then stopping that in about 3 weeks would be the most humane. But, some of the doctors say it delays the inevitable.
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.

fruckman
Posts: 4
Joined: Tue Jul 21, 2015 5:01 pm

Re: Drug Holiday

Post by fruckman »

An update.....
After 5-6 weeks of slowly tapering off Requip, I am now completely off the medication (2+ weeks) and most days and nights are symptom-free.
Honestly, this is not the outcome that I'd expected!
Some reasons why I think this worked for me:
1. I'd raised my iron level from 40 to 120. Pure speculation, but low iron may have been the cause of my symptoms.
2. I was on a relatively low dose of Requip (1 MG).
3. I'd been on Requip just 2-1/2 years.
4. My Neurologist suggested increasing my Gabapentin during this time. But, at no time did I take more than 400 MG.
5. Instead of getting worse, my symptoms gradually lessened.
I'm now tapering off the Gabapentin.
While everyone's situation is different, I hope this is encouraging to some of you.
And thanks to the RLS Foundation!!!! Without it, I'd never have known to have my iron level checked, and that Requip might actually be making symptoms worse.
I'd be happy to answer any questions, or speak to anyone by phone.
Fred

sleepdancer2
Posts: 222
Joined: Sun Jun 29, 2014 7:46 am

Re: Drug Holiday

Post by sleepdancer2 »

Thank you for coming back and sharing that. When I got off a med due to augmentation, my RLS was much improved too. My PLMD when no longer augmenting was much improved but still needed treatment. Always good to hear a story such as yours. Glad it worked out this way for you.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Polar Bear
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Re: Drug Holiday

Post by Polar Bear »

fruckman - what a wonderful outcome. I'm very happy to hear this.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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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Location: Los Angeles

Re: Drug Holiday

Post by ViewsAskew »

Wonderful news. Truly.
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.

JimmyLegs44
Posts: 90
Joined: Thu Oct 01, 2009 5:24 am

Re: Drug Holiday

Post by JimmyLegs44 »

Thank you for sharing your experience, and please let us know how the tapering off gabapentin goes. I'm curious if your symptoms will worsen.
The best way out is always through. - Robert Frost

badnights
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Location: Northwest Territories, Canada

Hope for us all!

Post by badnights »

fruckman, that's fantastic! I am sure it was your ferritin, but I'm curious how well your body will maintain its ferritin level. Are you still taking iron? I found whenever I stopped taking it, after a week or two my symptoms would get worse. And when I resumed taking it, after a week or so lag, the symptoms improved again. So if you're not taking it, I hope you keep in mind to try taking it again if your symptoms ever creep back.
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.

fruckman
Posts: 4
Joined: Tue Jul 21, 2015 5:01 pm

Re: Drug Holiday

Post by fruckman »

JimmyLegs44,
I've not been successful in tapering off Gabapentin (but frankly haven't tried very hard). I'd been on 400 MG during the taper off Requip. Once off Requip, I tapered to 300 MG with no difficulty. However, I had a bad night on 200 MG and decided to go back to 300 MG where I've stayed for 2-3 weeks. I'm not too motivated to get off Gabapentin as it does seem to help me sleep.
Overall, I'm still doing extremely well without Requip.
Sorry that I was so slow if responding to your note.
fruckman

fruckman
Posts: 4
Joined: Tue Jul 21, 2015 5:01 pm

Re: Drug Holiday

Post by fruckman »

badnights,
I intend to stay on a light dose of ferritin (325 mg daily) as a preventative measure, and have ferritin levels checked periodically. Fortunately, I seem to have no side effects from taking it, and like you, I'm thinking that getting my ferritin level up may have been instrumental in my successful taper off Requip.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Drug Holiday

Post by badnights »

That's a good plan. I mean, if you can eventually eliminate iron, it would be for the best, but not if the WED/RLS returns.

You probably have residual RLS/WED consisting of low-grade sensations and hyper-alertness (in my opinion, hyper-alertness is a symptom for many of us). The gabapentin is really good at counteracting the alertness.
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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