ropinirole and me

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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richviv
Posts: 22
Joined: Wed Apr 16, 2014 8:55 am

ropinirole and me

Postby richviv » Thu Jun 18, 2015 9:36 am

I have written here before, but too irregularly to be able to find my earlier writings-or maybe I am too lazy or tired to try. Anyway I wrote Dr,B. I take 6 to 8 mg of ropinirole, probably am augumenting and asked him to name a Dr in my area who could help me stop ropinirole without endless days/weeks/months of hyper RLS symptoms. He named a Dr, at Mayo Clinic. My insurance has placed hurdles between me and Mayos. I have seen another neurologist in my network, but it seems apparent he has no knowledge of how to stop ropinirole and may be even unaware of augmentation. My quandary has several facets, 1 Ropinirole, while having side effects and the potential to need 'more and more', does help. More specifically, if I start to experience RLS symptoms and take 2 mg of ropinirole the symptoms almost immediately stop. I usually do not have RLS problems at night-after taking 6 mg of ropinirole sometime during the day, but usually 4 mg about 5 pm. My problem with ropunirole is that my legs often bother me during the day-even at times 'kicking' and I am afraid, usually. to take ropinirole out of fear that I will be increasing my long term need for more and more and secondly-I do not like being "addicted' to a drug that i can not stop without potentially weeks of suffering .2, If i were able to stop ropinirole, what med will replace it? Will iit be effective? Will it have side effects and become augmented? and 3 why does my wife like our dog better than me?
Sadly, my arms are starting to ache-God, I hate Rls/WEd -and typing difficult

Rustsmith
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Re: ropinirole and me

Postby Rustsmith » Thu Jun 18, 2015 10:22 am

richviv, sorry to hear that you think that you are experiencing augmentation on ropinirole. Your description certainly seems to indicate symptoms that are headed in that direction and your are already taking a large dose. Take a look at the augmentation questionnaire in my signature to get a better idea of whether this is your problem. Some of the discussions in the augmentation section may also be of help.

To get off of ropinirole, you are going to need an understanding doctor who will work with you. It is not something that most of us can do by ourselves. As you will see in other posts, almost everyone requires some form of opiate during the transition phase off of ropinirole. Since your neurologist does not seem to have a clue, do you have a GP who would be willing to learn? Sometimes they can be the most helpful. If so, get a copy of the clinical guide to treating RLS that you will find listed elsewhere (sorry but I don't have my copy in front of me). Dr B is one of the authors and it is available from Amazon. Many of us have been able to educate our doctors with this by marking some of the sections, such as getting off DAs, and then asking the doctor for his/her comments. This approach is much less confrontational and is generally more acceptable to the doctors.

As for what to take afterwards, there are several options. There are two more dopamines (pramipexole and rotigatine (Neupro)). These should be as effective as your current ropinirole, but will also eventually cause augmentation. Neupro is supposed to take longer, but I an a case where it will eventually happen.
Another class of drugs are the alpha-2-delta medications, which include gabapentin, Horizant and Lyrica. These work well for some, but not everyone gets relief, especially for those of us where urge-to-move is a primary driver in our form of RLS
The final class of drugs are the opiates. There are quite a few drugs here that are used. Each has potential side effects and issues of their own. Addiction is generally not an issue because the doses are so low.
Experience has also shown that addition to opiates is not a common problem with RLS patients.

Hope that helps. You have a difficult road ahead, but can get through it if you can find the right physician to assist you.
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.

Polar Bear
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Re: ropinirole and me

Postby Polar Bear » Thu Jun 18, 2015 6:20 pm

richviv - here are the details of the book Rustsmith is referring to :)

Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition.
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

ViewsAskew
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Re: ropinirole and me

Postby ViewsAskew » Thu Jun 18, 2015 8:54 pm

Great advice so far.

Just wanted to say I've been where you are - it's a horrible place. It took me close to a year to find a doc willing to help. I lost that year of my life - I think I've chosen to forget the details because it was soooooo hard.

I did get through, though, and found a GP who would help. I found that, for me, it eventually became worth it to just forget the insurance and pay out of pocket. I kept having issues that my GP couldn't resolve and I tried other neuros in network - what a waste of time and copays. I eventually flew to So Cal to see Dr B - the flight, rental car, and appt cost about $800. But, he worked with me through email after - at no charge I might add - and we slogged through options until we found ones that worked. Now, I just fly out once a year and figure it's my vacation. I stay with a friend, so I don't have that expense, and an annual visit is much less than the first one. So, with flight, car, and visit, it costs me about $500 a year. I was spending $100 copays to see my neuro every month - that cost me more than going to California!
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.

richviv
Posts: 22
Joined: Wed Apr 16, 2014 8:55 am

Re: ropinirole and me

Postby richviv » Fri Jun 19, 2015 3:30 am

I would like to thank each of you for your replies. I almost avoid coming to this site because it causes me to reconsider my situation . Sometimes I wish I had never heard of augmentation-so I could be blissfully experiencing the positive aspects of taking so much ropinirole and be ignorant as to why I have day time issues. Then I would not know that there is a possibility that my RLS/WED issues might be better if...... .That IF is the bottom line. If I am able to stop ropiniole (a big if) is there a more effective med with less side effects (another big ?) .
I think it is almost certain i am augmenting ( i answered every question on the suggested augmentation questionnaire positively) . I think it is highly unlikely that there is a Doctor in my insurance plan who either a, knows alot about augmentation etc or b, would be willing to learn about treating augmentation etc..
Given these two facts, plus the fact that there seems to be no other medication that is a guarantee for an improved life, I must decide if I want to try to stop the ropinirole . But after reading views askew thoughts, if I decide to try to stop the ropinirole, I will forget insurance, dig into my meager savings, and either go to California or Mayos. I have wasted enough time and money seeing local Drs. who are less informed than me. My GP will likely keep prescribing 8 mgs of ropinirole, (but will do nothing much to help me quit).

ViewsAskew
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Re: ropinirole and me

Postby ViewsAskew » Fri Jun 19, 2015 4:58 am

At some point, you most likely will get a very rude awakening. I did. I had 24/7 symptoms. I had to take the DA 3 times a day to get relief. Then, even that stopped working. I had breakthrough PLMW all the time. My legs would jerk out from under me while walking off RLS symptoms. It was truly hell. I couldn't keep taking it anymore. Yet, no one would help me stop. When I finally did find someone, the worst part may have been that my symptoms did not return to pre-augmentation levels. Whether something happened permanently in my brain or the disease worsened that much, I didn't get the happy-happy-joy-joy that many do when they do stop. I've often had to wonder if staying augmented to that degree for that long didn't harm me in some way.

I spent 18 months augmented. I spent 12 of that augmented severely. I spent the last 6 months with almost no sleep, I couldn't work, and went from doctor to doctor (I think I saw ten of them). It truly was the worst time of my life.

If you can at all deal with it before it gets to that, I highly recommend it.

I probably just chased you away for another period, lol.
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.

dayandnight
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Joined: Sun Feb 26, 2012 4:24 pm

Re: ropinirole and me

Postby dayandnight » Fri Jun 19, 2015 8:23 am

Yeah, you need to get off of the Requip. When I went to see Dr. B the first time I was taking 14 mg a day. He got me off of that by putting me on Oxycodone. But there in lies the rub. You get dependent on that too and then you have to go through opiate withdrawal in order to get off of that. I'm not going to tell you you what you want to hear with all the fluffy feel good jargon, but you really are caught between a rock and a hard spot. No easy way out of all this. And just think, you have a lifetime of this ahead of you.

MaryAnneW
Posts: 9
Joined: Tue Jul 14, 2015 6:56 am

Re: ropinirole and me

Postby MaryAnneW » Tue Jul 14, 2015 2:21 pm

I am currently on this fx for past year. Started off on 1mg now up to 4mg. It is giving me acid reflux overnight and indigestion for most of the day. Have been taking 4 mg since March. Now I get RLS during day and at night tingling in my hands and arms. I was so sick yesterday I had chills and nausea. Last night I took nothing, did not sleep much but this morning I have felt the best since started to take this. I am calling dr today to switch me to something else.

ViewsAskew
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Re: ropinirole and me

Postby ViewsAskew » Wed Jul 15, 2015 4:25 am

MaryAnne - do look for info here on augmentation. Your symptoms are absolutely suggestive of it. Stopping a dopamine agonsist once you have augmented is usually more complicated than just switching to another med.
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.

sleepdancer2
Posts: 190
Joined: Sun Jun 29, 2014 7:46 am

Re: ropinirole and me

Postby sleepdancer2 » Wed Jul 15, 2015 7:44 am

MaryAnne, if you've been on a higher dose for a year, I would be concerned about just stopping it. I did that and ended up with a permanent neurological glitch. Please do step down to a point where it is safe to stop.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

MaryAnneW
Posts: 9
Joined: Tue Jul 14, 2015 6:56 am

Re: ropinirole and me

Postby MaryAnneW » Tue Aug 04, 2015 10:54 pm

Dr put me on 1 mg of pramipexole. So far no RLS during day or in arms. Still not sleeping well. Anyone have any heart issues caused by the meds? I have been having some irregular rhythms.

Tulab
Posts: 1
Joined: Sat Aug 22, 2015 5:10 pm

Re: ropinirole and me

Postby Tulab » Sun Aug 30, 2015 6:42 pm

Hello I am new to this discussion board and am in UK ..I have had Rls for 35 yrs although back then I guess neither I and especially my Dr back then even knew what it was that I was describing to him . So ..came years and years of this stupid horrible thing that was driving me insane .. People just couldn't get their heads around the whole leg feeling thing ... I have always said to my poor husband that I feel the opposite to being a vampire and dread the night as I knew what that and every night since has brought me ... My Dr. Didn't know what to say I am sure he felt that I was just a stupid 27 yr old with 3 children and they were somewhat the cause of my symptoms and gave me Pathiodine as he said it was depression I quickly recoiled and said I have nothing to be depressed about I have a great family and lovely house and no money problems ..but it fell of deaf ears and I threw the tablets away and didn't ever mention it to him again as he clearly was too busy to be bothered .

So as not to bore you all years passed still bad symptoms ...dreading night ...not being able to sit down on a plane with any comfort . I actually moved away from there and developed Asthema ...whilst in my new Drs waiting room I saw a article on a new drug to help with RLS ..which was called premoxipole ...my now Dr would not allow me to try it as he said it was too new ... So I quickly saw another Dr in the practice who understood and that he had already had people on it so let's give it a try . I must say that this tablet worked so well for me for 2 yrs .. but that was its life for me ....so by this time what was left for me to do ... Next came Ropinirole with no other tablets .... I wish it had been the end of this story but NO... The burning sensation in my legs and so much kicking cause me to have and still does cramp .. So I have been taking Gabapentin Ropinirole and half tablet of Quinine .. And guess what at the age 62 next month .. I still dread every night ...I am sorry if this has offended or frightened anyone reading this .. I am just telling it like it is .. I would just like one of those Drs to go through just a week of what I have had to go through and still am for the past 37 yrs .. This started after my last child was 2 yrs old ... Thanks for reading .

67java89
Posts: 32
Joined: Tue Jul 26, 2016 3:35 pm

Re: ropinirole and me

Postby 67java89 » Sun Aug 21, 2016 10:01 pm

richviv wrote:I have written here before, but too irregularly to be able to find my earlier writings-or maybe I am too lazy or tired to try. Anyway I wrote Dr,B. I take 6 to 8 mg of ropinirole, probably am augumenting and asked him to name a Dr in my area who could help me stop ropinirole without endless days/weeks/months of hyper RLS symptoms. He named a Dr, at Mayo Clinic. My insurance has placed hurdles between me and Mayos. I have seen another neurologist in my network, but it seems apparent he has no knowledge of how to stop ropinirole and may be even unaware of augmentation. My quandary has several facets, 1 Ropinirole, while having side effects and the potential to need 'more and more', does help. More specifically, if I start to experience RLS symptoms and take 2 mg of ropinirole the symptoms almost immediately stop. I usually do not have RLS problems at night-after taking 6 mg of ropinirole sometime during the day, but usually 4 mg about 5 pm. My problem with ropunirole is that my legs often bother me during the day-even at times 'kicking' and I am afraid, usually. to take ropinirole out of fear that I will be increasing my long term need for more and more and secondly-I do not like being "addicted' to a drug that i can not stop without potentially weeks of suffering .2, If i were able to stop ropinirole, what med will replace it? Will iit be effective? Will it have side effects and become augmented? and 3 why does my wife like our dog better than me?
Sadly, my arms are starting to ache-God, I hate Rls/WEd -and typing difficult

Ah, this has been my exact problem with Ropinirole. My RLS started 2 years ago during a taper from Klonopin. I have a very good doctor who first checked my ferratin levels, then suggested I try Ropinirole at the smallest dose possible (she's great)! One of the things she thought would help was that Ropin has the side effect of drowsiness, which she thought would help me get to sleep. I resisted for 3 months b/c I was coming off Klonopin and didn't want another drug. When I finally gave in after a summer of almost no sleep, I was disappointed. Ropinirole worked for the legs but I didn't get the nice side effect of drowsiness. I had intended it as an "as needed" med but here it is 2 years later and still on.
Sleep is a basic need.

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

Re: ropinirole and me

Postby Rustsmith » Sun Aug 21, 2016 10:36 pm

Hello I am new to this discussion board and am in UK ..I have had Rls for 35 yrs although back then I guess neither I and especially my Dr back then even knew what it was that I was describing to him . So ..came years and years of this stupid horrible thing that was driving me insane .. People just couldn't get their heads around the whole leg feeling thing ... I have always said to my poor husband that I feel the opposite to being a vampire and dread the night as I knew what that and every night since has brought me ... My Dr. Didn't know what to say I am sure he felt that I was just a stupid 27 yr old with 3 children and they were somewhat the cause of my symptoms and gave me Pathiodine as he said it was depression I quickly recoiled and said I have nothing to be depressed about I have a great family and lovely house and no money problems ..but it fell of deaf ears and I threw the tablets away and didn't ever mention it to him again as he clearly was too busy to be bothered .

So as not to bore you all years passed still bad symptoms ...dreading night ...not being able to sit down on a plane with any comfort . I actually moved away from there and developed Asthema ...whilst in my new Drs waiting room I saw a article on a new drug to help with RLS ..which was called premoxipole ...my now Dr would not allow me to try it as he said it was too new ... So I quickly saw another Dr in the practice who understood and that he had already had people on it so let's give it a try . I must say that this tablet worked so well for me for 2 yrs .. but that was its life for me ....so by this time what was left for me to do ... Next came Ropinirole with no other tablets .... I wish it had been the end of this story but NO... The burning sensation in my legs and so much kicking cause me to have and still does cramp .. So I have been taking Gabapentin Ropinirole and half tablet of Quinine .. And guess what at the age 62 next month .. I still dread every night ...I am sorry if this has offended or frightened anyone reading this .. I am just telling it like it is .. I would just like one of those Drs to go through just a week of what I have had to go through and still am for the past 37 yrs .. This started after my last child was 2 yrs old ... Thanks for reading .


Welcome Tulab - I REALLY wish that your story was new - but alas it is a common history that almost all of us share. Doctors who have no idea what we experience, accusations of mental issues that don't exist or underestimation of the severity of depression when it does occur, a succession of medications that work for a while and then turn against you, it goes on and on. Often I try to look at the up side of a situation. In my case, my RLS made it possible for me to tolerate frequent international travel as part of my job simply because I was used to working through sleep deprivation, so jet lag wasn't as much of a problem for me as it was my associates. The nights also meant that I had more hours available during a day to be able to work, especially once we had email and internet access. Now that I am retired, it means that I have more hours in the day to do work around the house (as long as it is quiet enough so that it won't wake my wife).
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.

Krm
Posts: 3
Joined: Sun Sep 04, 2016 3:57 pm

Re: ropinirole and me

Postby Krm » Mon Sep 05, 2016 9:12 pm

I recently joined the forum, hoping to find some answers and am feeling soooo discouraged! There don't seem to be many happy stories and the few that I have found don't sound like severe RLS to me. I started developing RLS about 10 years ago when I was on an antidepressant. Went off the drug and my legs stopped bothering me. A few years later, my legs started cramping again and I started getting up in the middle of the night and soaking in a really hot bathtub. This became routine and while it affected my sleep it was bearable for a few years. Then I went on a .25 mg dose of ropinirole. That was five years ago. My dose is now 1.5 mg, plus 300 neurontin and .25 klonopin. My symptoms are controlled, and I am not technically augmenting but probably heading in that direction. I had one night from hell when I ran out of my ropinirole (long story) and it disturbs me how bad my symptoms are now are without meds. This finally prompted me to get more proactive about my condition. My GP is useless. I basically inform him about RLS and even then he doesn't follow through correctly on anything I ask him to do. I am waiting to set up an appointment at John's Hopkin's but am very frighten about going off of the ropinirole. In the meantime, I am doing things to improve my overall health because that can't hurt, I suppose.


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