Attempting to get off Ropinirole - again

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EllenSpoehr
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Joined: Fri Aug 26, 2016 11:50 am

Attempting to get off Ropinirole - again

Postby EllenSpoehr » Sat Apr 07, 2018 12:25 pm

Hello all:

I reached out in the fall because I was making an attempt to get off Ropinirole for the first time in over 17 years. Needless to say, I was not successful. I was able to reduce the ropinirole from 3-4 mgs per day with awful symptoms to 1 mg combined with Horizant using opioids during the reduction period, however, my doctor was hesitant to prescribe opioids as a long term method to manage my symptoms. The obstacles were neverending - insurance refusing to cover Horizant and Lyrica as alternatives - or the opioids beyond a 3-5 day prescription, refusing to cover a sleep study, etc. I was able to stop the ropinirole for a total of one week, but not beyond that as the opioid prescription ran out.

I just went for a second opinion in University of Pennsylvania (doctor listed on this site) and he is suggesting long term management with opioids and forgoing the Horizant altogether. Again, the goal would be to get of the ropinirole for good. I am glad to see the Horizant go as I really do feel that it is causing mood issues. Once again, I faced insurance issues with the opioids as they refused to cover it. I paid out of pocket (as I had in the fall).

I feel like I have been on a roller coaster with no way off and feel that managing this condition with opioids will just be another uphill battle. I welcome any success stories with long term management using opioids as this also concerns me.

legsbestill
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Location: Dublin Ireland

Re: Attempting to get off Ropinirole - again

Postby legsbestill » Sat Apr 07, 2018 1:09 pm

It is probably worth getting off the ropinerole if only to see how bad your base line symptoms really are. How is your serum ferritin? I found getting this figure up helped with symptoms.

As you don’t like Horizant, it might be better to eliminate this also.

There are many on here (and elsewhere) who manage their symptoms successfully/very successfully with opioids but I found it difficult. I was prescribed OxyContin and needed a strong dose (30mg) at night to quiet the legs. This led to an unpleasant withdrawal the following day about 11 or 12 and also I developed central sleep apnea. Moreover, I found that I was profoundly alert at night thanks to the OxyContin which meant I was exhausted in the day.

I took to using Kratom and pregabalin to manage my rls and alternated this with neupro every few weeks. It was reasonably successful but I was still often exhausted during the day. Also Kratom is something of an expenditure.

Recently I have tried dipyridamole - you can find a very long thread about my experiences and those of Holland who is also using it. I don’t know how it would work out with your insurance but of the drugs I have tried dipyridamole is one of the less expensive ones. My current system is the best I have been on since discontinuing pramipexole two years ago.

ViewsAskew
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Re: Attempting to get off Ropinirole - again

Postby ViewsAskew » Sat Apr 07, 2018 6:16 pm

I personally like the idea of using opioids short term - just to get through the worst of it - then seeing what happens.

I am a success story using methadone, but it isn't perfect by any means. If I were to do it again, I'd stop it immediately after and use nothing for a time, even if it were hellish. I do believe it's possible that we need more time to reset receptors and the like before we can really know what it's like. What I don't know is how long that is and if it could be shortened by not using any pharmaceuticals.

I'd also get the ferritin up more quickly. It really did help me and I wish I'd pushed for an infusion sooner. Now, it will not help everyone, but worth it to find out if you are one it will help.
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: Attempting to get off Ropinirole - again

Postby badnights » Mon Apr 16, 2018 6:06 am

HI EllenSpoehr. I've been managing my symptoms for 7 or 8 yrs with an opioid (hydromorph contin) after augmenting on each of ropinirole and pramipexole, and getting little benefit and a lot of problem from gabapentin. and trying a few other things. Since I started on the hydromorph, my problems have been few, as follows:
  • I couldn't fall asleep or stay asleep and eventually was prescribed a sleep aid which I still take today (zopiclone)
  • I wanted to sleep all day until we added in an alerting med (modafinil)
  • Until I was able to lower my hydromorph dose (thru diet changes), I couldn't have an orgasm.
Other than that, the medication has been a godsend, and I can't say if the first two items are due to the hydromorph or were there anyway (for example, my symptoms were so bad I wouldn't have noticed if I also had insomnia). the inability to orgasm was just the most obvious sign of broader changes to the endocrine system but I've had a hard time getting solid information on those changes. not everyone agrees.

If I had it to do over again, I would get my ferritin up right away, I would change my diet right away (eliminate gluten, dairy, added sugar, additives, and modified oils; reduce carbs, increase fats, ensure abundant vegetables of many types), I would make sure my hydromorph dose never got above 12 mg daily, and I would immediately stop trying to lead a normal life and instead I would understand that I needed to reduce my expectations and cut back on everything.

And if I had control over anything, I would never ever have taken a DA. And I would never ever have taken gabapentin, which made me suicidally depressed.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

67java89
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Joined: Tue Jul 26, 2016 3:35 pm

Re: Attempting to get off Ropinirole - again

Postby 67java89 » Fri Dec 07, 2018 10:01 pm

I've been trying to get off Ropinirole for 4 years, also unsuccessfully. It seems to be the only thing that works. I am currently experiencing augmentation symptoms. I really think that doctors don't understand/know how to treat this disease. Keep fighting and I wish you well on your journey!
Sleep is a basic need.

Rustsmith
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Re: Attempting to get off Ropinirole - again

Postby Rustsmith » Fri Dec 07, 2018 11:31 pm

I've been trying to get off Ropinirole for 4 years, also unsuccessfully. It seems to be the only thing that works. I am currently experiencing augmentation symptoms. I really think that doctors don't understand/know how to treat this disease.


Getting off of ropinirole requires finding a doctor who understands how to treat augmentation since many do not, including most neurologists. If you can travel to a Foundation Quality Care Center, they will be able to help you out since this is one of the requirements for them to get that title. You can also try the neurology department at the closest medical school/teaching hospital since they see more patients with difficult situations than other doctors. A third option is to start calling every neurologist in your area, ask to speak with the nurse and then ask 1) does the doctor have experience treating augmented RLS patients and 2) will the doctor prescribe opioids for chronic conditions. The answer to both should be an emphatic yes. As a last resort, if you PCP is willing to learn, copy some of the Foundation's material on augmentation and buy a copy of "Clinical Management of Restless Legs Syndrome", 2nd Ed by Lee, Buchfuhrer, et al. The book is available from Amazon for about $35. Mark critical passages in each and then share them with your PCP.

As for approaches for getting off of any dopamine agonist, there are two approaches. Some experts like to have a patient wean down to a lower dose (maybe 1mg of ropinirole) and then stop cold turkey. This causes the patient to get almost no sleep for about 4 days and the RLS goes crazy during that period. Many give up before they are finished, but the idea is to re-establish the patient's baseline condition before starting treatment again. Other doctors take the approach that the patient is going to require an opioid to manage RLS after stopping the dopamine, so they simply provide enough opioid to cover the dopamine withdrawal. This is a much easier approach for the patient, especially if the pre-augmentation RLS was severe.
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.

67java89
Posts: 38
Joined: Tue Jul 26, 2016 3:35 pm

Re: Attempting to get off Ropinirole - again

Postby 67java89 » Sat Dec 08, 2018 6:09 pm

Wow, looking at the map I am disappointed to see how FEW Foundation Quality Care Centers are in existence. I think my best bet at this point is my PCP since she seems open to new treatments. I am only on 1mg Ropinirole per day, so I could easily get off it. Problem is, then my RLS symptoms are unmanageable and I'm walking the floors all night.
Sleep is a basic need.

Rustsmith
Moderator
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Attempting to get off Ropinirole - again

Postby Rustsmith » Sat Dec 08, 2018 9:18 pm

looking at the map I am disappointed to see how FEW Foundation Quality Care Centers are in existence


Part of the problem is that there are so few doctors who are well enough versed in the treatment of RLS to become Quality Care Centers. The other issue is that there are doctors out there (mine is one), who are already so overwhelmed with patients that they don't want to apply for QCC status because that would simply bring in even more patients and this would degrade the care that they provide to their existing clients. The doctors at the teaching hospitals are doing what they can to spread the word by increasing the number of residents who are familiar with treating RLS, but unfortunately this is something that takes time and cannot be rushed.
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.


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