Anyone NOT experience augmentation on ropinirole?

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SleepyJudy
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Anyone NOT experience augmentation on ropinirole?

Postby SleepyJudy » Fri Apr 12, 2019 7:58 pm

I finally broke down and asked my doctor for a prescription for ropinirole after trying several other things like magnesium, increasing iron intake, etc. and getting no relief. I told my doctor that I don't want to take it every day, to only use it when I haven't slept in a week or when I have to be on a plane for a few hours, because of my fear of augmentation. She said that she has one patient who takes it as needed - he works on the river and while he's out on the boat for a week at a time, he can't take it, but when he's home on the weekends, he takes it mostly to not disturb his wife, and that seemed to work for him. She prescribed 1 mg, but I knew from reading this board (so glad for that info) that was a relatively high dose to start, so the first night, I took .5. That still made me a little bit woozy, so the next time I tried it, I took .25. That worked fine, so the few times I've taken it since then, I've stuck to that dosage. After a night without having symptoms, I am so tempted to start taking it every night, but I'm still worried about augmentation. So this is my long way of asking if anyone on here hasn't experienced augmentation after taking it nightly and has been able to stay at a low dose for a long time. Also, even on the nights I take it, my quality of sleep isn't great. I don't know if my insomnia is part of the RLS or if my body has gotten so used to disrupted sleep that even if the reason for the disruption is taken care of, it's just kind of a habit now. Or if the insomnia is a separate issue entirely, age related or something. I'm wondering if anyone has had success taking CBD oil for insomnia along with ropinirole. I live in Kentucky and marijuana is not legal here, but CBD oil is. Thanks!

stjohnh
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Re: Anyone NOT experience augmentation on ropinirole?

Postby stjohnh » Fri Apr 12, 2019 8:13 pm

Hi SleepyJudy, sounds like you are still sleepy, like many of us.

Dopamine agonists like ropinirole are generally thought to eventually cause augmentation in nearly everyone, though may take over 10 years for some. Augmentation is less likely if the dose is kept as low as possible and iron levels kept up.

There are two main metabolic paths that cause the two primary RLS symptoms (jumpy legs and poor sleep). Urge to move (jumpy legs) is mostly mediated by the dopamine pathway. Sleep problems are mostly mediated through the glutamatergic pathway. Ropinirole is a dopamine agonist, so you can imagine it mostly affects the urge to move, and doesn't help sleep much (except in early RLS where urge to move is the main reason for sleeplessness). Medicines that help sleep are gabapentin (and its expensive relatives, Lyrica and Horizant), THC, and opioids (though they sometimes cause hyperalertness by themselves). The most commonly used by members on this forum that seem to get reasonably consistent results are gabapentin, THC (medical marijuana) and kratom (acts somewhat like an opioid). There are a large number of other treatments and medicines used by members of this forum, but it seems like most of the others only help a few people. Standard sleep prescriptions from doctors help only a little for most people. Avoid over the counter sleep tablets. Many contain Benadryl= diphenhydramine, which makes RLS worse.

None of these will give you normal sleep, but can significantly help. The treatment that seriously improves sleep is IV iron infusions. Iron is the only treatment that gets to the basis of RLS, BID (Brain Iron Deficiency).
Blessings,
Holland

Rustsmith
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Re: Anyone NOT experience augmentation on ropinirole?

Postby Rustsmith » Fri Apr 12, 2019 8:30 pm

SleepJudy, I never took ropinirole, so my comments are not based upon personal experience. However, research has shown that almost everyone will eventually experience augmentation when taking a dopamine agonist on a regular basis. The catch is, "eventually" can mean days or many years. The time also depends upon things such as the dose and your ferritin level.

As for your "plan" to only take it occasionally, I haven't any medical literature on augmentation when occasionally taking a DA, but it is probably a safe bet that the chances of augmentation will be reduced. How much that reduction would be would depend upon how frequently you took it.

As for your insomnia, there is a very good chance that what you are experiencing is part of your RLS. Research a couple of years ago at Johns Hopkins found that RLS not only produces issues with out dopamine levels, but also causes us to have elevated glutamate levels at night and this is what results in the insomnia. Taking a DA helps reduce these levels as do the things that Holland mentioned (gabapentin/Horizant/Lyrica), THC and kratom.
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.

SleepyJudy
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Joined: Fri Jun 08, 2018 4:23 pm

Re: Anyone NOT experience augmentation on ropinirole?

Postby SleepyJudy » Fri Apr 12, 2019 9:43 pm

Thanks, Holland and Steve. I will bring it up with my doctor at my next appointment. I forgot to request she check my ferritin level for my last blood test, so I will ask her about that as well. Thanks again.

badnights
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Re: Anyone NOT experience augmentation on ropinirole?

Postby badnights » Sat Apr 13, 2019 4:56 pm

Glad you're getting your ferritin checked, it;s an important guide to stores of iron in your body. Different parts of our bodies can have different amounts of iron stored, so you can't really tell, but if ferritin levels in the blood are low, there's some part of you that's low in iron. With us, it's generally our brains.

0.25 mg ropinirole is the proper starting dose for WED/RLS. I'm sooo glad you found us and read up on it before you started medication. Augmentation can happen much faster if the starting dose is higher. I augmented in three days on 0.25 mg, so be cautious about how often you take it. (My ferritin was probably around 60 then.) I think that it's best not to take a dopamine-type med at all unless your ferritin level is above 50 or even 75. Even once you hit that level and start taking the DA, you should keep taking iron to try to achieve and maintain a level of 100.

Remember that it takes 1.5 - 2 hr to kick in, so plan accordingly.

I've been using levo-carbidopa for breakthru symptoms for 5 or so years now without augmentation. I am careful to use it no more than 3 times a week and no more than two nights in a row.

As the others have said, the insomnia is part of the RLS/WED and the greatest problem we face once the urge to move is under control. I take zopiclone, try to keep it to half of a 7,5 mg pill but many nights I use the whole thing. I;ve added Lyrica/pregabalin but keep it to a low dose and only 5 nights a week because I experienced suicidal depression on another anti-convulsant. I;ve tried other things for sleep but nothing else seems to work as well.
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.

QyX
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Re: Anyone NOT experience augmentation on ropinirole?

Postby QyX » Mon Apr 15, 2019 2:12 pm

I did augment after I only took my 2nd pill of Ropinirole. The augmentation I had on it was especially brutal.

About augmentation in general: it seems like that the longer people take DAs, the more of them will augment. When I remember the study correctly about 80% of the patients who took DAs had augmentation issues after 2 years.

Unfortunately CBD is often not really helpful with RLS insomnia. CBD can improve REM sleep but it normally doesn't make you tired in any way.

So even when you life in a state where Cannabis is illegal, there are still some legal FDA cannabis products that can be legally prescribed by your doctor. (Sativex spray which contains THC / CBD in a 50:50 ratio and a product that is called "Marinol" which is nothing else than pharmaceutical grade THC). Unfortunately this stuff is expensive and your insurance will most likely not cover it.

I've tried to fix my insomnia issues with all kind of drugs. I literally tried everything that made any sense to try. In the end only THC did help me.

For some patients drugs like Lyrica, Gabapentin, Carbamazepine & Oxcarbazepine are helpful with insomnia. For quite a few years I did benefit a lot from Carbamazepine until I started to have paradox reactions to the drug.

Some patients also tolerate drugs like Zopiclone or Benzodiazepines well, even when taken over a longer period of time.

Keep trying and also consider opioids, even when it is really difficult to obtain a prescription for them. But I have to say: opioids can also cause insomnia and the situation can become super difficult when you require opioids to manage your RLS but they instead are making the insomnia even worse.

Unfortunately there is no real easy quick solution to RLS insomnia. You just have to try and try and try until you found something that works for you without causing too many side effects.

ViewsAskew
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Re: Anyone NOT experience augmentation on ropinirole?

Postby ViewsAskew » Wed Apr 17, 2019 5:36 am

QyX wrote:I did augment after I only took my 2nd pill of Ropinirole. The augmentation I had on it was especially brutal.

About augmentation in general: it seems like that the longer people take DAs, the more of them will augment. When I remember the study correctly about 80% of the patients who took DAs had augmentation issues after 2 years.



I thank that figure is related specifically to carbidopa-levadopa - I seem to recall that the augmentation rate for C-L is around 80-85% in a short time. It isn't accurate for the DAs. I seem to recall that the average time to augmentation is around 16-18 months, but that some people reach 10 years and still have not augmented. I also seem to recall that the rate of augmentation is somewhere around 6-8% a year and that by 10 years or so, a majority of those taking DAs have augmented.

My experience with ropinerole was similar to yours - it was on my first dose - but I had already augmented on pramipexole (in about a week). Hellish stuff!
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.

debbluebird
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Re: Anyone NOT experience augmentation on ropinirole?

Postby debbluebird » Wed Apr 17, 2019 1:13 pm

badnights wrote:I've been using levo-carbidopa for breakthru symptoms for 5 or so years now without augmentation. I am careful to use it no more than 3 times a week and no more than two nights in a row.


I tried levo-carbidopa. For me I had faster augmentation with it than with Mirapex. I'm only taking the mirapex about once a week. I find that the next night after taking it I have insomnia for the whole night, not being able to sleep until morning, and then for only about 4 hours. Luckily, lately I'm able to go to sleep around midnight. I am up every 2 or 3 hours. Then I usually manage to get more sleep in the mornings. So I am averaging about 8 hrs. I feel that's pretty good.
On the other nights I take gabapentin, some hemp oil and Kratom. I also take methadone, only a small amount. At the moment I am trying to wean off that.
It seems like I'm having better sleep lately.

SleepyJudy
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Joined: Fri Jun 08, 2018 4:23 pm

Re: Anyone NOT experience augmentation on ropinirole?

Postby SleepyJudy » Thu Apr 18, 2019 3:52 pm

Thanks everyone for the input. I tried cutting the dosage of ropinirole in half again the other night (so .125) and it still helped, so on the occasions that I do take it, I will stick with that dose - the pills are small to begin with, so by the time I cut them into eighths, it's basically a crumb. I should probably ask for tablets that are a lower dosage. :-) This bottle will last me quite a while if I keep only taking it sporadically and cut them in eighths, though.

I went to the local health food/supplement store yesterday, and the guy recommended a liquid iron supplement that also includes B12 and C - he said it was the best absorbed iron supplement they had. I also asked about insomnia (I already take l-theanine and sometimes valerian root, which sometimes seem to help and sometimes not) and he said that one of his co-workers swears by a certain type of CBD oil. They didn't have it in stock, so he asked the woman if she'd give me the latest free bottle that the merchandiser had given her and she actually did. They didn't even charge me for it. I guess that's one benefit of living in a small town! Anyway, I will try it the next time I use the ropinirole, since I feel like that'll give me the most accurate idea of whether it helps my insomnia or not. The woman said she's out like a light with it, but I'm trying not to get my hopes up, especially since most on here say CBD doesn't help them sleep. The bottle says less than .3% THC, which I think it has to be to be legal in KY.

I'm going to start a list of the ideas and recommendations from everyone for my next doctor appointment. Thanks so much.

badnights
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Re: Anyone NOT experience augmentation on ropinirole?

Postby badnights » Fri Apr 19, 2019 6:56 am

I don't think the pills come in anything smaller than 0.25, and they're definitely not designed to be split! It would be easier if at least they were scored.

I've had poor results from pure CBD oil - it made my sleep very fractured. I had mixed results with the Sativex spray, the poor nights were bad enough that I stopped using it.
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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