tapering off ropinirole

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Polar Bear
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Re: tapering off ropinirole

Postby Polar Bear » Fri Aug 18, 2017 7:01 pm

The movement disorder specialist suggested upping your ropinerole to 1.5 mg.!! Oh dear, another specialist who needs educated.
How good to know that you were well informed on the usage of ropinerole.
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

fuz_mind
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Re: tapering off ropinirole

Postby fuz_mind » Sat Aug 19, 2017 2:58 pm

Polar Bear wrote:The movement disorder specialist suggested upping your ropinerole to 1.5 mg.!! Oh dear, another specialist who needs educated.
How good to know that you were well informed on the usage of ropinerole.


yes.... :) with a huge sigh of relief !

Twitchylegs
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Re: tapering off ropinirole

Postby Twitchylegs » Thu Jan 04, 2018 5:18 am

Hello! My neurologist who specializes in RLS has suggested I taper off ropinirole. I agree with him as I believe I am augmenting and some awful side effects of the ropinirole are escalating and taking away much of my life quality.
Because of a series of medical messes and my unawareness, my current daily dosage of ropinirole is 4.5 mg. I have been at this dosage for over two years.

Doctor has me tapering .5 mg daily for 9 days. He has prescribed 2 Lyrica 75 mg before bed, and increased my lorazepam to 1.5 mg. daily as needed. I began tapering yesterday.

"the transition period (tapering from a dopamine agonist) will typically be a hellish experience", says Clinical Management of Restless Leg Syndrome. This makes me nervous! :shock:

I would appreciate knowing other people's experiences with tapering. I am worried that my high daily dosage (4.5 mg) may in some way make this process more difficult.

I will report back during this process.

badnights
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Re: tapering off ropinirole

Postby badnights » Thu Jan 04, 2018 7:37 am

Hi twitchy
Your doctor is right that you need to get off the ropinirole. But I am not sure that 150 mg Lyrica will do much of anything for augmentation and dopamine-agonist withdrawal. In my experience, it's not very effective against even moderate WED/RLS.

How long have you been on the lorazepam? Do you find it helps with the WED/RLS sensations, or does it help you in some other way? What is it like when your symptoms are active and the lorazepam kicks in? It's such a bizarre world, to think a doctor would rather increase a benzodiazepene that is not known to have any effect on RLS/WED except anecdotally, than prescribe an opioid which is known to have good effect on severe symptoms.

Your doctor is going by the book, so to speak; the Foundation's Medical Bulletin and the IRLSSG white paper on augmentation both recommend reducing the dopamine-type medication and increasing either an alpha-2-delta (like Lyrica) or a long-acting DA like rotigotine. He will likely increase the Lyrica dose with time.

Be sure that your ferritin levels and iron status in general are checked; vitamin D levels too. Ferritin levels under 75 are linked to worse symptoms, also to more likelihood of augmenting on a dopamine-type medication. Low vitamin D is suspected to make symptoms worse, but the evidence isn't as strong. I suspect you know this already ...

The single most important thing to remember in the coming weeks is to make sure your doctor knows specifically how your symptoms are impacting you. How many hours of sleep, how fragmented; how much time spent standing or walking; your mental state during the day; can you concentrate? can you do your job/ care for your kids / carry on a conversation? Too often we gloss over all this, or assume the doctor knows what we're going through , but they don't and you have to be sure to explain it. He has to know how much you're suffering in order to get motivated to find a way to alleviate your suffering. You have to do your part by telling him.

I will also recommend that you taper off as quickly as possible, just based on personal experience and what I've heard from others here. Plan to have no sleep for 3 days, and very little for 5 more days. Take a week off work (more if possible). The first few days will be the worst, so the good news is that they will end, and you start to see a light at the end of the tunnel. The reason to do it quickly is that the healing doesn't begin until all of the ropinirole is gone from your body and your body has had a chance to "re-set". That won't happen while any ropinirole is still in your system, so a long taper is generally unbearable.

that said - my brain is slowing down but I want to give you this last thought - someone here controlled their augmentation by doing withdrawing, I think., every few months, before the augmentation got really bad. And other people have been able to control it by reducing the dopamine-type med without cutting it out completely (for most people that doesn't work, but I guess it does for some). There are other ways of treating it too, than what your doctor is attempting.

Do you have a copy of Clinical Management of Restless Legs Syndrome, 2nd edition by Lee, Buchfuhrer, Allen and Hening, published in 2013? It has a discussion of augmentation treatment that is to-the-point. Would be good for you to read, for yourself, and also to bring to your doctor, if it comes to that.

sorry long ugly post, I hope there's something useful there.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Twitchylegs
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Re: tapering off ropinirole

Postby Twitchylegs » Thu Jan 04, 2018 5:44 pm

Thank you badnights.

I very much appreciate the information and perspectives you shared. I will be keeping them on my computer screen as a valuable reference.

Briefly responding to some of your questions and information.

My doctor is open to opioids, I mentioned some unpleasant side effects with opioids and so he went another direction. But the possibility of having them is there. It sounds like I will want to revisit those side effects and decide if they are tolerable as opposed to effects of tapering.

I took 150 mg Lyrica last night and slept without waking for the first time in as long as I can remember. I was a little more dizzy than usual this morning upon waking. But that has decreased and I am my usual dizzy, from the Ropinirole. Also, I am enjoying more energy than usual today. Because of the good sleep last night I will be rested for the upcoming sleepless nights! :lol:

I am considering the lorazepam to be useful as a calming agent while I go through this.

My ferritin levels are being checked and I assume Vitamin D is being checked also. I expect the results today. That information appears it will be a useful part of this puzzle and I am glad I'll know where it fits.

Your powerful advice to communicate thoroughly to the doctor through this process was very beneficial. He is accessible and has a RN who works closely with me and the doctor. I do tend to be glossy and so I am going to quit that and tell it like it is!

Happily, I received my copy of Clinical Management of Restless Leg Syndrome [b]yesterday! Both husband and myself are devouring it information.[/b]

It is so helpful to have this conversation.

Thanks again for your help and support.

stjohnh
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Re: tapering off ropinirole

Postby stjohnh » Thu Jan 04, 2018 9:47 pm

Beth described it well. In summary, hellish is putting it mildly. I'm 70. It was right up there with the two or three worst experiences of my whole life.
Blessings,
Holland

Twitchylegs
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Re: tapering off ropinirole

Postby Twitchylegs » Sat Jan 06, 2018 11:43 pm

Thanks stjohnh for your response.
Has anyone tried using medical purpose cannabis oil during withdrawal of ropinerole? It is legal in Nevada. I am thinking the long term effects would be preferable to Lyrica or opioids.

Rustsmith
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Re: tapering off ropinirole

Postby Rustsmith » Sun Jan 07, 2018 12:30 am

The experience of most of us has been that CBD is not strong enough to handle even day to day RLS movement problems, much less the issues during DA withdrawal. And the experience of most has been that Lyrica is also not strong enough to cover the symptoms during withdrawal.

So, the general experience has been that you only have 2 choices, use of an opioid (at least for the first week) or go through that week with no sleep.

When I was faced with recovering from augmentation from pramipexole and rotigatine, the deciding factor for me was the answer to the question of what I was going to do once I "recovered". The answer that my doctor and I agreed upon was that I was going to need to go on an opioid because I was already taking gabapentin for migraine prevention. So, I knew that gabapentin (or Lyrica) wasn't going to be strong enough to manage my RLS and that left an opioid. I have been on a low dose of methadone now for almost 2 years and it has been far better than the 2+ years that I was on one of the DAs.
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.

Twitchylegs
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Re: tapering off ropinirole

Postby Twitchylegs » Sun Jan 07, 2018 3:15 am

Thanks rustsmith, I appreciate the experience and information in your response. Nothing speaks more truth than a person having been there.
Today is day 5 of my 9 day taper.
When will I begin to experience unpleasant withdrawal problems?

stjohnh
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Re: tapering off ropinirole

Postby stjohnh » Sun Jan 07, 2018 4:06 am

Twitchylegs wrote:Thanks stjohnh for your response.
Has anyone tried using medical purpose cannabis oil during withdrawal of ropinerole? It is legal in Nevada. I am thinking the long term effects would be preferable to Lyrica or opioids.


When I was getting off mirapex (similar to ropinerole) I tried cannabis which didn't help with the jumpy legs. Kratom would likely help, works somewhat like an opioid.
Blessings,
Holland

ViewsAskew
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Re: tapering off ropinirole

Postby ViewsAskew » Mon Jan 08, 2018 6:35 am

I didn't experience any hellish problems until my dose was very low. They were mild. It wasn't until I stopped them that it became hell.
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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Re: tapering off ropinirole

Postby badnights » Mon Jan 08, 2018 7:07 am

I quit cold turkey, so it got nuts right away. But I was only on - I think -1.75 mg of ropinirole, if I'm remembering right. Let;s not assume it's going to get nuts.... maybe you'll luck out! How are you now? It's fantastic that you had that relief, and I hope you're still having it. It's great that you have the option to go to opioids if you need to. There's lots of different opioid meds and each one can have different side effects, so you might find one that's tolerable.

Re the dizziness from Lyrica, I think it might go away with continued use, if I recall correctly what other people have said.

Because of the good sleep last night I will be rested for the upcoming sleepless nights! :lol:
You're too funny :)

I do tend to be glossy and so I am going to quit that and tell it like it is!
You're not alone. A lot of us tend to be that way.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Twitchylegs
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Location: Henderson, NV

Re: tapering off ropinirole

Postby Twitchylegs » Mon Jan 08, 2018 6:29 pm

Thank you Ann & Beth. I am so happy with the support I feel with each response. I am seeing that one of the most important assets I have while going through ropinerole cessation is the support and valuable input here.

Tomorrow ends the tapering off.

I received my ferratin count and it's at 289. Surprised me as I take no supplements of any type. I think that high level maybe easing the withdrawal symptoms. But as Ann said things got uglier when she finished tapering.

I also have high hemoglobin and don't know if that's related to the high ferratin. I'm going to have that conversation with the doctor. I am a Stage IV colon cancer survivor (2 years) and think chemo after effects are causing some blood issues.

The past two nights I have experienced "twitchylegs " and arms to the degree of not much sleep. Maybe 3-4 hours.
The marijuana oil isn't helping RLS nor calming me. So that question is answered.

As you suggested Beth, the dizziness has decreased from the Lyrica.

I am hoping to be one of the lucky ones as Ann commented. I'll keep you posted.

Thanks to all!!
Twitchylegs

Polar Bear
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Re: tapering off ropinirole

Postby Polar Bear » Mon Jan 08, 2018 10:25 pm

Twichylegs - that's a pretty good ferritin level at 289, in particular without any supplements.
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

Twitchylegs
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Location: Henderson, NV

Re: tapering off ropinirole

Postby Twitchylegs » Tue Jan 09, 2018 1:26 am

Hi Polar Bear. Yes it is. The RN was going to check with my doctor about it. I haven't heard back, yet. She said it was possibly my higher levels of hemoglobin. No one has been able to find a reason for the increased level even after extensive testing. The hemotologist told me sometimes they are unable to identify the cause.
I did make a typo, the ferratin level is 269. I apologize for the error.


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