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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.
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CathyT
Posts: 6
Joined: Mon Sep 21, 2020 6:58 pm

New to this board

Post by CathyT »

Hi everyone,

Thank you for adding me. Here is my story. I’m anxious to hear experiences from others!

I was diagnosed with RLS in 2005 after going to a doctor regarding my symptoms. I had no idea what it was but knew it was miserable. The doctor prescribed Ropinirole (Requip) and it was like a miracle and began working the very first night.

I’ve been quite fortunate in that the drug controlled my symptoms until about three years ago when I began having some breakthrough symptoms. I went back to my neurologist and he increased my dosage of Ropinirole to 4 mg ER at bedtime. That helped tremendously and I only occasionally had to take the clonazepam that he also gave me if I had a rough night.

Fast forward to about two months ago when the 4mg of Ropinirole stopped cutting it. Most nights I have to add some sort of sleep aid if I want relief. (Clonazepam, Tylenol PM, hydrocodone). My neurologist has moved away and I made an appointment with a new neurologist and saw him today.

He did an EMG. Is that standard? All the years I saw my old neurologist he never once suggested an EMG. The EMG findings were normal so he sent me home with another rx to take in addition to my Ropinirole. The brand name is Neurontin 300mg. He told me I could take up to three of those before bed along with my Ropinirole but that I should start out with lowest dose and see how I do. After reading the pharmacy leaflet I am a bit nervous but at this point willing to try. I will take my Ropinirole this evening along with 300 mg of Neurontin and see how things go.

Has anyone had experience with this? With combining these two drugs? How long might they work before I find that they are no longer handling my symptoms. I realize I was fortunate to have such a long run with the Ropinirole but am wondering what’s next.

If you’ve read all of this, thank you! I appreciate any comments or suggestions.

Cathy

Rustsmith
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Re: New to this board

Post by Rustsmith »

Cathy, doing an EMG test is not standard but it also isn't unheard of. It isn't necessary to diagnose RLS but some doctors like to use it to rule out other conditions.

As for Neurontin, that is the tradename for gabapentin. Gabapentin is a common medication for treating RLS, in fact, the latest consensus recommendations for treating RLS recommend using gabapentin (or it's cousins Horizant and Lyrica) prior to trying Requip. Combining gabapentin with other meds is also very common, especially for those of us with severe or difficult to treat RLS. It doesn't always help with the need to move, but it can be an extremely effective sedative for the insomnia side of RLS and is safe to use up to doses well over 1600mg (although adding more becomes less useful at the higher doses).

Since you mentioned using Tylenol PM, you should try to avoid any of the PM type over-the-counter medications. They all depend upon Benedryl as the sedative in the product and Benadryl is quite possibly the most common RLS trigger.

Finally, did either of your neurologists ask for bloodwork to determine your iron levels? RLS is due to an iron deficiency in the brain. It is not possible to measure iron in the brain, so most doctors check on ferritin levels in the blood as a less than ideal surrogate. Having high ferritin levels does not guarantee any benefit, but low ferritin (or other iron levels) can be a good indicator that some sort of iron therapy would be beneficial.
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.

CathyT
Posts: 6
Joined: Mon Sep 21, 2020 6:58 pm

Re: New to this board

Post by CathyT »

Steve,

Thank you so much for taking the time to share your knowledge about this disease and its treatment. I am truly grateful.

I had no idea that Benadryl would make my RLS worse!! Omgosh I will stop taking that immediately!!

As for iron levels, neither doctor suggested my levels be checked. I will see if I can get them to give me a lab slip to have it done.

I was taking two 2-mg ropinirole tablets each night. Now with the addition of the Gabapentin and not knowing how I’ll respond to it since this is my first night taking it, would you suggest I still take my normal 4mg of Ropinirole......or should I just maybe take one 2-mg tablet?

I’m relieved to know the Gabapentin is widely used and seemingly safe.

Thanks again!

Rustsmith
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Location: Colorado Springs, Colorado

Re: New to this board

Post by Rustsmith »

You absolutely should continue taking the Requip - for now. You are currently at the maximum recommended dose of ropinerole for RLS and might be starting to augment on it. Augmentation occurs when it stops helping with your RLS and starts making it worse. Most doctors and very many neurologists are not familiar with augmentation because it is a side effect that is specific to RLS and the use of dopamine agonist meds like Requip. You can read more about augmentation in our forum on that topic. Most of the members of this board have been through it and would agree that it is absolutely not fun.

At some point, you will eventually need to get off Requip and when that happens, you face an absolutely miserable week because quitting any of the dopamine agonist meds (Mirapex and Neupro are the other two that are usually used for RLS) means that you will not get any sleep at all for a week. That doesn't mean poor sleep, it means none at all for at least seven days and the worst RLS you have ever experienced. The only way around this is to have a doctor who is knowledgeable in treating augmentation and who is willing to prescribe an opioid to cover the Requip withdrawal effects. Even amongst the RLS specialists, not all agree with that "kinder" approach because they say that you eventually have to get off of the opioid as well. Personally, I have been through opioid withdrawal twice and that was a cake walk compared to quitting Mirapex.
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.

CathyT
Posts: 6
Joined: Mon Sep 21, 2020 6:58 pm

Re: New to this board

Post by CathyT »

Thank you Steve!

Polar Bear
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Re: New to this board

Post by Polar Bear »

As Steve has said, you are taking the maximum recommended daily dose of ropinerole at 4mg.
Just to note, many of our esteemed RLS experts would now consider that 1mg daily should be the max daily dose in order to try and avoid augmentation. Coming off Requip/Ropinerole is a challenge but there is a great deal of information here and always wonderful support.
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

CathyT
Posts: 6
Joined: Mon Sep 21, 2020 6:58 pm

Re: New to this board

Post by CathyT »

Thank you Betty and Steve. So grateful for you sharing your knowledge with me!

So last night I took my Ropinirole along with the new rx Neurontin that the neurologist prescribed yesterday. I had absolutely no breakthrough RLS symptoms and slept really well. I don’t feel groggy this morning like I sometimes do with other drugs that help with sleep. So that’s good!

Why do they give us these dopamine antagonists if we eventually will need to come off them and it’s so difficult to do so.? I think tonight I think I’m going to try taking one Ropinirole tablet tonight (2 mg) along with the new Neurontin and see how it goes.

What is a good rx to take for this disease rather than things like Requip that end up causing trouble? Can one simply take Neurontin to control it?

I’ve begun reading through this board and learning. So glad I found it!

Thanks again!

Polar Bear
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Re: New to this board

Post by Polar Bear »

At a dose of 4mg ropinerole you would need to wean off them if you ever wanted to stop.
How did you get on last night using just 2mg.

I think to drop from 4mg to 2mg is too big a step. I would go down only .5mg at a time. Splitting your pills if necessary. They are an awkward shape to split.
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

stjohnh
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Location: Palo Alto, California

Re: New to this board

Post by stjohnh »

I agree with Betty, SLOWLY taper off.
Blessings,
Holland

badnights
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Re: New to this board

Post by badnights »

Why do they give us these dopamine antagonists if we eventually will need to come off them and it’s so difficult to do so.?
It seems perverse, doesn't it? But it's simply ignorance. They aren't taught about what happens to us, and it doesn't come up in their databases when they look things up. So they think they're helping us.
What is a good rx to take for this disease rather than things like Requip that end up causing trouble? Can one simply take Neurontin to control it?
The only things that work consistently are opioids. People who haven't augmented on dopamine meds (and some who have) can manage with anti-convulsants like gabapentin/NEuronitn or pregabalin/Lyrica, and rarely someone can go 20 years on a dopamine med without augmenting, but most of us need to use opioids. Those are the only 3 classes of meds there are that have an effect on WED/RLS.
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.

oldtechygirl
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Joined: Sun Oct 25, 2020 6:08 pm

Re: New to this board

Post by oldtechygirl »

I successfully used ropinerole and then time-released ropinerole for almost 30 years. One pill at bedtime and then NO RLS. Just recently, I started to have breakthrough symptoms and added .5mg earlier in the evening to control that, but only when it happened. When it became regular, I realized that augmentation had finally started. So I'm in the process of switching to pregabalin. But, I would not trade those 30 care-free years for anything! It was like a miracle that lasted a long, long time. So now I'm in transition to another regimen that will, hopefully, treat my symptoms successfully. I have a specialist at Mayo Clinic and trust that she will guide me to something that works. I really don't think anyone should dismiss ropinerole because it will likely lead to augmentation. There are other options if and when that happens. It gave me wonderful quality of life for a long, long time and I'm only sad now that it can't go on forever.

badnights
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Re: New to this board

Post by badnights »

oldtechygirl wrote: I would not trade those 30 care-free years for anything! ... I really don't think anyone should dismiss ropinerole because it will likely lead to augmentation.
You're absolutely right. I tend to be guided by my deep fear of the horror that I experienced and the ensuing long-term worsening of the disease. There are other people who, like you, have successfully been treated by dopamine agonists for decades. If I could have had the last 13 years living as a normal person, I am sure I would not be warning people against the DAs.

I cannot help but give the warning, though; the DAs took what was a relatively small problem (though it didn't seem so at the time) and turned it into a ruination that has lasted over a decade. In my zeal to ensure people know what they risk, I forget to mention what they might gain.
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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