New member with a few questions

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
badnights
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Re: New member with a few questions

Post by badnights »

Not that it's very different, but this is my not-so-tired reply:
You're right, gabapentin and the other anticonvulsants are rarely effective by themselves in someone who has augmented. Even Betty is taking some codeine with her pregabalin. I also wish more GPs - more everyone - were familiar with augmentation. That single knowledge gap accounts for the bulk of visits to RLS/WED specialists, and the bulk of our collective grief.

I'm glad you're working on the post-ropinirole plan now, while you still can think rationally (it gets harder during withdrawal). I think you have to speak to the nurse/doctor again, to get a prescription in hand for Horizant or gabapentin, and to provide them with the RLS Foundation's Medical Bulletin for healthcare providers and other handouts on augmentation (see the link in my signature block; the 3rd or 4th item on the linked-to page tells you how to get these). It would be best to read them yourself first, choose which you're going to hand to the nurse, and highlight the parts that are relevant to you. Try to keep your highlighting to only the sentences that summarize, since h/she will not have much time to read it. They should understand that you will be experiencing severe symptoms and might be unable to sleep for days.

Later you can provide the paper on the proper use of opioids to treat WED/RLS, but I wouldn't lead off with that, to avoid giving the impression you're seeking recreational drugs.

And it might wise to lay in a store of kratom. Good luck :)
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.

Polar Bear
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Re: New member with a few questions

Post by Polar Bear »

Beth has mentioned that along with pregabalin I use codeine.

Just to confirm I use pregabalin 200mg x 2, i.e. morning and evening. I have Codeine 15mg x 14 daily. When on ropinerole they were spread over the 24 hours, less in the morning and more in the evening and during the night.

Since stopping the ropinerole/DA my symptoms have reduced so much. I don't take any Codeine in the morning, often don't take any at lunchtime, and take 4 pills at 5pm and 9pm. Very occasionally one or two during the night. I haven't told my Dr I have reduced the Codeine as it's always useful to have a stash.

I did at a time also use Kratom, when I was weaning off the ropinerole, even though it's illegal where I live. I reckoned if I was caught they could go ahead and charge this 70 year old - I was past caring. I no longer need to use it but do keep a stash of it.

I think it's always good to have a back up stash should our RLS suddenly decide it would no longer playing ball and there was a need to up our meds. Also good for occasional breakthrough.

Please know that when augmenting I was so afraid of weaning off the ropinerole, that's why I took it so slowly. Got down to 75mg and then stopped. You will never regret coming off your DA. You have a harder journey in front of you than I had but please do come off them.
I hope it will be easier than you think.
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

Perry01
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Joined: Tue Jan 07, 2020 8:59 pm

Re: New member with a few questions

Post by Perry01 »

So my pharmacist recommended a longer than the 28 day taper by using my stash of 4mg. Ropinirole to stretch the taper to 35 days by dropping a mg. every 5 days instead of every 3. My dr’s office sent a prescription for gabapentin but only thirty 100mg tablets. I’m definitely gonna need more as time goes by. I wonder what kind of dose I will end up needing? I forgot to mention that my Dr’s PA prescribed me twenty-one 5-325 mg. Vicodin.

I’m on day 3 of taking 7mg. instead of the usual 8mg. of ropinirole and no worsening of symptoms yet. I will start adding 100mg. of gabapentin when I’m down to 4mg. of ropinirole and the Vicodin when needed. I will keep you posted how it goes.

Polar Bear
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Re: New member with a few questions

Post by Polar Bear »

Good luck. You have a plan.
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

badnights
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Re: New member with a few questions

Post by badnights »

sounds good, perry01! The longer taper makes sense.

You're right you'll probably need more gabapentin. Did you ask about Horizant? It's more expensive but more predictable - gabapentin is absorbed erratically and therefore the same dose might not have the same effect from day to day. Horizant was developed to circumvent that (it turns into gabapentin once it's already been absorbed).

When I was taking gabapentin, I was ended up increasing it steadily (tolerance?) to eventually 1800-2100 mg daily, plus 150 mg or so of codeine, and my symptoms still weren't controlled.

It's nice you got some Vicodin. Your doctor/PA has a poor understanding but at least he's trying. Maybe you'll be the one to broaden his/her understanding. The acetaminophen in the Vicodin is not going to be helpful, since WED/RLS is not a typical pain condition. Also, 5 mg hydrocodone is almost negligible. It's nice to have, but don't be surprised it you need to take 3 pills along with gabapentin to notice any effect. I found that when I had only a few Percocets (each containing 5 mg oxycodone, which is more potent than hydrocodone), taking one was like flushing it down the toilet, but taking 2 at once helped a bit. So use your Vicodin judiciously.
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.

ViewsAskew
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Re: New member with a few questions

Post by ViewsAskew »

Perry01 wrote:So my pharmacist recommended a longer than the 28 day taper by using my stash of 4mg. Ropinirole to stretch the taper to 35 days by dropping a mg. every 5 days instead of every 3. My dr’s office sent a prescription for gabapentin but only thirty 100mg tablets. I’m definitely gonna need more as time goes by. I wonder what kind of dose I will end up needing? I forgot to mention that my Dr’s PA prescribed me twenty-one 5-325 mg. Vicodin.

I’m on day 3 of taking 7mg. instead of the usual 8mg. of ropinirole and no worsening of symptoms yet. I will start adding 100mg. of gabapentin when I’m down to 4mg. of ropinirole and the Vicodin when needed. I will keep you posted how it goes.
Will be looking forward to your progress. Congrats on the first reduction!
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: New member with a few questions

Post by Polar Bear »

Perry01 - wondering how you are feeling in your reduction. Keep strong.
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

Perry01
Posts: 9
Joined: Tue Jan 07, 2020 8:59 pm

Re: New member with a few questions

Post by Perry01 »

Polar Bear wrote:Perry01 - wondering how you are feeling in your reduction. Keep strong.
Well, I began my taper on March 19th. I started out dropping from 8 mg daily to 7 mg daily. After 10 days, I dropped down to 6 mg, then 10 days later, I dropped down to 5 mg daily. Tomorrow, I will be down to 4 mg of requip.

The first two weeks, I felt no worsening of symptoms at all. Only after dropping down to 5 mg, have I noticed RLS symptoms during the daytime. If I try to nap, I have restless legs. Last night, I took 5 mg of requip. At bedtime, my symptoms were back with a vengeance. I had to use our guest room to keep from waking my wife. After a few hours of suffering, I caved and took my first Vicodin and was asleep within 20 minutes.

I think it’s now time to supplement the Requip with 300 mg of Horizant.

Any input?

Polar Bear
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Re: New member with a few questions

Post by Polar Bear »

Well done. You’re now down to 5mg.

As I got lower I made the reduction smaller.....just saying....
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

badnights
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Re: New member with a few questions

Post by badnights »

At bedtime, my symptoms were back with a vengeance. I had to use our guest room to keep from waking my wife. After a few hours of suffering, I caved and took my first Vicodin and was asleep within 20 minutes.

I think it’s now time to supplement the Requip with 300 mg of Horizant.

Any input?
Sure sounds like it's time. See if the 300 mg helps at all. Also, pay attention to your mood. If you are plunging into dark moods more than usual, it could be the gabapentin causing it and you should stop if it';s affecting you that way because it has been known to make people suicidal.
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.

Perry01
Posts: 9
Joined: Tue Jan 07, 2020 8:59 pm

Re: New member with a few questions

Post by Perry01 »

Update,

I’m down to 2 mg of requip and taper down to 1 mg next Monday. I am still taking 300 mg of Horizant with the requip but I am thinking it is time to increase my dose of Horizant. If I try to nap during the day, my RLS prevents it from happening and instead of the usual symptoms (tingling feeling) I now have pain deep in my quads when trying to fall asleep.

On a side note, I had my rotator cuff repaired a week ago today. I was prescribed Percocet for pain and have a bottle of 30 to help with post surgical pain. What I don’t use for pain can be used for withdrawal symptoms.

ViewsAskew
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Re: New member with a few questions

Post by ViewsAskew »

That Percocet may be your best friend if you can keep from using it now!
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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Posts: 5721
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New member with a few questions

Post by badnights »

Bonus re the Percocet. Use it judiciously! but if you are really tired and need to nap, it might be useful for that, since it will take effect within 30 minutes.
Hope the additional Horizant gives you enough relief to sleep at night.
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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