New member with a few questions

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badnights
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Re: New member with a few questions

Postby badnights » Thu Mar 26, 2020 3:06 am

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

Postby Polar Bear » Thu Mar 26, 2020 3:48 pm

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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Re: New member with a few questions

Postby Perry01 » Fri Mar 27, 2020 3:59 am

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

Postby Polar Bear » Fri Mar 27, 2020 11:54 am

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

Postby badnights » Sat Mar 28, 2020 5:32 pm

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

Postby ViewsAskew » Sun Apr 05, 2020 6:29 am

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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Location: N. Ireland

Re: New member with a few questions

Postby Polar Bear » Sun Apr 05, 2020 3:50 pm

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


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