Requip

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.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
badnights
Moderator
Posts: 5304
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Requip

Postby badnights » Mon Dec 23, 2013 5:24 am

Re splitting the pilll - corrie, are you on the extended-release version? That might explain both the hard shell and the drop in efficiency that the pharmacist spoke of
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.

badnights
Moderator
Posts: 5304
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Requip

Postby badnights » Mon Dec 23, 2013 5:59 am

ViewsAskew wrote:
shelby1 wrote:I believe I did augment on the carbidopa and in a very short time. I took requip for many years and had a problem with dropping off to sleep when sitting still or watching tv at 1mg 4x a day. I went off the requip in July and started the carbidopa in extended release. I have symptoms 24-7 not just at night. My primary physician said that the only thing he had left was a narcotic which I really didn't want to take. He referred me to a neurologist who prescribed the two together. I was on the garbapentin a few years ago after back surgery. That sometimes made me feel like I was drunk. So I knew the two together might be a problem. As far as quitting my job, I was ready to do so anyway. I had been going through hell he past 6 weeks or so with the leg symptoms and not sleeping. Since starting the two together a week ago I have been doing really well by staggering the two meds and have not had any symptoms which is absolutely amazing. My Dr said that is one of the worst cases of RLS he has ever seen. But I'm willing to work with this therapy for now anyway. Thanks for the info


Was the WED/RLS 24/7 when you first started taking the ropinerole?


shelby1
You are going to be in deep doo-doo, forgive the bluntness and metaphor, in a very short time, in all probability. That dose of ropinirole is pretty much guaranteed to cause augmentation, from what I understand.

Even more important, you are probably still augmented. This is what Ann is getting at. Generally when people stop the drug that caused augmentation (levo-carbidopa in your case), symptoms go even wilder for a time, then they calm down. The calming happens after the drug has been cleaned out of your body. But your doctor started you on another dopamine drug (ropinirole) before the first one was out of your system. Even worse, before that you were started on levo-carb before the previous ropinirole was out of your system. Your body never got the chance to flush either drug out of your system and recover from the augmentation before a new augmentation-inducing drug was added. I would guess, if I had to, that you're still augmented, which is why you need such a high dose. I'd also bet that the effectiveness of this high dose won't last for long, and will lead to worse augmentation.

Did I explain this well enough? I am remembering when I first learned about all this. The weirdest thing for me was trying to grasp that the doctors didn't know about augmentation ... that they could, with the best of intentions, hurt me so badly.

How long ago did you start ropinirole the first time? What, if anything, were you taking before that? When did the symptoms develop into 24/7 symptoms: before or after starting medication for the disease?

Another question - sorry I'm so wordy - Why did you reject the opioid? Opioids have been shown to be a very effective treatment for WED, as long as side effects are tolerable. The risk of addiction is way less than in the general population, probably because WED patients don't have enough endorphins (and other natural opioids) in our brains.

Please check out the references in the links under my signature. Some of them are tough sledding, but very valuable - if you want to pick and choose, try Buchfuhrer's paper, and also the extract from Management of Restless Legs Syndrome - especially the paragraph on p182 that includes this line " ... replacing one dopaminergic drug with another might cause recurrent augmentation and physicians should be very vigilant for its re-emergence. Drug levels should be kept as low as possible..."
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.

shelby1
Posts: 14
Joined: Mon Dec 09, 2013 12:01 am
Location: Northern Plains

Re: Requip

Postby shelby1 » Mon Dec 23, 2013 6:29 am

Wow-thanks for the info. I will certainly take it to heart. I think you're right about the Drs now knowing what they might be doing. My primary care physician did not know that carbidopa would lose effectiveness and require more which is what happened. The neurologist told him about that. You are absolutely correct that I went from one drug to the other. I started Requip in 2006 and gradually worked up to 1mg 4x a day by spring of 2013. I did have 24-7 symptoms before ever taking any meds.
I guess I am just afraid of a narcotic and the risk of addiction. Certainly something I was considering as a last resort, however. I will watch for the augmentation to escalate as now I know what it is and if so, will contact neurologist immediately. Thank you again for the information. Right now, I have had 10 days of NO RLS so I am in total heaven at this time but I am thankful for your information and will be waiting for the other shoe to drop. At least now I have some answers instead of just more meds. The one question I guess I do have, is how do you clean your system out from all meds and tolerate the RLS symptoms at that time? I imagine that is awful.
Thanks again

badnights
Moderator
Posts: 5304
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Requip

Postby badnights » Mon Dec 23, 2013 7:58 am

It is awful, indeed it is, but a knowledgeable doctor will prescribe a potent opioid for that period of time. It lasts a few days to a month, but for most people, it seems to be over in week or two, with the first 3-5 days being the worst. Generally people can see a light at the end of the tunnel after 3-5 days, which is the hope you need to keep going.

If you have opioids, which are the only thing that can help, the withdrawal can be bearable and you might even get some sleep. Simply knowing that it will end can be what sustains you.
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.

cornelia

Re: Requip

Postby cornelia » Mon Dec 23, 2013 10:49 am

Badnights: no, I have never been on extended release Requip and nowadays I'm not on Requip or another DA anymore, but I will be in future because I have to change regularly.
Corrie

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Requip

Postby Joanie60 » Thu Jan 02, 2014 8:30 pm

Shelby1

Sorry we all seem to be reacting strongly to this. In my case, it is because I have been on the Requip train from hell. I started at one tablet (0.25) per day and ended up at 9-12 per day. At the time, conventional wisdom was 4 mg (16 tablets) was ok for RLS. The problem was, I became a zombie during the day! I was on Requip for about a year and a half. I thought the first .25mg tablet was a miracle. By the end, popping a dozen pills became a nightmare.

I was also afraid of addition issues (re: opiods). My husband is in recovery (28 years without a drink or drug) and we are quite involved in the recovery community, even running a halfway house for addicts!! But I have been on Percocet for a year and a half. I quickly found that 2 pills (5 mg each) was my "sweet spot" but now have to add an extra 5mg occasionally. My doc says up to 20mg per day is ok, but I don't want to run up the tolerance so I work to keep it to 2-3 tablets per day, never ever 4.

I keep one week's worth in my purse (in pill bottle that says something else), keep a copy of the receipt from the pharmacy hidden in my purse (ok, I've seen too many episodes of COPs!!), and lock the rest in an at-home safe. No one except my husband knows that I am on it.

Percocet has been a miracle drug for me. I would not abuse it because I would run out and can't imagine a hell worse than no meds, or Requip. (I did try the gabapentin route but gained weight like a full time donut taste-tester).

Give it some thought and try not to let fear rule you. If you take more than prescribed, you are setting yourself up for WED hell :-) But if you keep to prescribed levels, it may be just the trick.

shelby1
Posts: 14
Joined: Mon Dec 09, 2013 12:01 am
Location: Northern Plains

Re: Requip

Postby shelby1 » Tue Jan 07, 2014 9:13 pm

I have been on the prescribed dose of Ropinerole 2mg 4x day and Garbapentin 300 3xday since Dec 12 and getting along really well-so far. Not one instance of RLS in that time. I am very careful to space both of them out so I don't take them at the same time as that makes me a little dopey for a while. After all the info I have received I will watch for augmentation because I didn't know what it was before. So far no weight control issues or compulsions as has been noted but again I am watching for any of those signs and have told my husband to watch as well in case I do not realize a change has occurred. My temperament hasn't seemed to change or at least no one has told me so!
My job was extremely stressful so maybe that has been a change for the better to have retired from that. I would like to apply for disability-has anyone been successful in doing so?
What a nightmare this disease can be! From all outward appearances you are the picture of health unless people observe an episode then they don't understand what you are experiencing and why you can't control the impulses to move.
I appreciate more than I can say all of the replies and the information that I have gotten here. Thanks again!

badnights
Moderator
Posts: 5304
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Requip

Postby badnights » Thu Jan 16, 2014 9:05 am

It's amazing how much stress can worsen it. And it's pretty hard to avoid stress when you're living with WED, so what to do? At least you have some relief, and you're aware of the potential issues and what to watch for. You have a lot going for you right now, so enjoy! And it can't hurt to start the disability process, especially since you have some peace and energy now with the symptoms under control.
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.

shelby1
Posts: 14
Joined: Mon Dec 09, 2013 12:01 am
Location: Northern Plains

Re: Requip

Postby shelby1 » Fri May 09, 2014 4:35 pm

Just a quick update. I have been on the last medication dosages since December and have done very well. Not even ONE episode of leg issues which is the closest thing to a miracle that I could ever have. I have not augmented on the ropinerole and take it every 6 hours. I rarely take gabapentin. The side effects are the worse thing-weight gain, hallucinations, and sleep issues-can't sleep at night and drop off to sleep easily in the daytime, accelerated heart rate to name the worst. I have gained 60 pounds since 2006. Dr says lose weight and sleep more. Nutritionist says I am already following a diabetic diet with low calories so doesn't know how advise differently. Feet and ankles are seriously swollen so exercise is difficult. But aside from all those issues I do feel a lot better. Dr put me on Neupro patch yesterday at 1M which doesn't make sense to me after I am already on 8. But the cost is horrible so I am wondering how much the coupon from the manufacturer will pay? I have a high deductible of 5500 on my ins on drugs. Thanks for all the info=invaluable.

ViewsAskew
Moderator
Posts: 15768
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Requip

Postby ViewsAskew » Fri May 09, 2014 7:34 pm

sorry I missed your earlier question.

Several people here have had luck with disability - I'd guess three or four people over the years that said something. Not sure any of them are posting regularly now. If you search on disability, you'll find the older topics about it - what they did, and so on.

Per your ropinerole, you are on a high dose - do watch that carefully. It's not high for a Parkinson's patient, but is for someone with WED/RLS. History has shown us that those high doses often lead to issues with augmentation. So far, sounds as if all is fine in that regard - just something to pay attention to.

I don't know why the doc suggested Neurpo unless he's thinking you'll switch to it since you're taking ropinerole around the clock. Did he say why? You are absolutely right about how expensive it is....
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.

shelby1
Posts: 14
Joined: Mon Dec 09, 2013 12:01 am
Location: Northern Plains

Re: Requip

Postby shelby1 » Wed Jul 02, 2014 10:47 am

Dr gave me a referral to Mayo and have an appointment next week. I hope they can come up with a medication protocol that will work and get rid of the nasty side effects of the ropinirole. I have not had issues with leg symptoms since Dec and would take the side effects rather than the hell I went through with the legs. However, the side effects are over the top now. I am looking forward to the appointment to find out.

sleepdancer2
Posts: 211
Joined: Sun Jun 29, 2014 7:46 am

Re: Requip

Postby sleepdancer2 » Thu Jul 03, 2014 2:33 am

Having augmented on a dopamine agonist, I can't emphasize enough the need for a weaning process after being on higher doses of one of these meds. I chose to not wean and stopped abruptly and it caused some long standing neurological symptoms. I never took the weaning warning on meds seriously till that experience.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

pab628
Posts: 46
Joined: Mon Jun 11, 2012 3:43 pm

Re: Requip

Postby pab628 » Mon Jul 14, 2014 4:32 pm

Well, now I'm really confused. I take 3 1/2 mg Ropinirole spread out over the day. I take 1/2 mg at 10:45, 1/2 mg at 1:45, 1/2 mg at 4:45 and then 2 mg at 8:30 in the evening. These pills are not scored and I've been using a pill cuter to score them (each pill is 1 mg). Yikes....am I not supposed to score them because they lose effectiveness? If I keep busy throughout the day, I don't always have symptoms; however, give me a rainy day when I'm doing a lot of sitting, I usually do have problems. Plus most nights. My question is should I stop scoring the pills and maybe experiment with taking 1 around noon; and then 2 before bed or possible 1 around 5:00 and then 1 at bedtime. I also take 1/2 mg clonazepam at bedtime. My neurologist is very kind, but, sometimes I think a little clueless. PCP started me on 1/2 mg pill about 6 years ago, increased to 1 mg and then sent me to my neurologist. I've been on 3 1/2 mg probably for a year or maybe 2. I sleep about 7 hours most nights, thank goodness (in between potty runs).

Polar Bear
Moderator
Posts: 7593
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Requip

Postby Polar Bear » Mon Jul 14, 2014 10:27 pm

You are doing pretty well getting 7 hours sleep nightly.
However as previously mentioned, your daily dose of ropinerole is way above what is now considered best daily max of 1mg.
I take 4 mg spread over 24 hours and have done for several years (when this dosage was considered acceptable). I am very unhappy at the thought of the ordeal of reducing/stopping this.
I also split the pills, I split the .5mg pill to make .25mg. They do not split evenly and often its more a case of 1/4-3/4.

If you slightly vary the dosage and/or times of taking your ropinerole you will soon know if it is working or not.
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

pab628
Posts: 46
Joined: Mon Jun 11, 2012 3:43 pm

Re: Requip

Postby pab628 » Mon Jul 14, 2014 11:46 pm

I talked with my pharmacist and he said it was okay to split this particular pill. I know they are saying only 1 mg of Ropinirole, but my neurologist didn't seem concerned. I usually tolerate medicine very well. But, wish there was something better. I do see that some people take much more Ropinrole or different cocktails of drugs which I wonder if that's good for your body.


Return to “Prescription Medications”

Who is online

Users browsing this forum: No registered users and 1 guest