tapering off ropinirole

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badnights
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Re: tapering off ropinirole

Postby badnights » Thu Jun 29, 2017 9:53 am

fuz wrote: i think i might have been too optimistic about my neuro. he sent me the 2016 AAN guidelines for my "reading pleasure" - he clearly didn't agree with ropinirole 1mg at max dose......
Then perhaps you could give him Buchfuhrer's 2012 paper for HIS reading pleasure. Written by someone who treats a lot of WED/RLS including augmentation and refractory cases. Follow the link in my signature below any of my posts.

I tried wellbutrin and was convinced that it made my symptoms worse, but in all honesty, I only took it for a few days, and I was on a roller coaster from gabapentin anyway (erratically effective and messing with my mood).

My GP sent me to a psychiatrist once, convinced that I needed treatment for depression. She was astounded when she read from his report out loud to me, what he had said to me in person: sleep deprivation symptoms can mimic those of any of the major psychiatric illnesses, including psychoses. I feel the truth of this every time I have a good sleep :)

I'm not sure if the DA withdrawal can cause mood problems, but logic suggests it could make any existing problem worse, whether the existing depression is from sleep loss or something else.

Have you been shopping around for a different neuro? Can you get to a Quality Care Center?
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

badnights
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Re: tapering off ropinirole

Postby badnights » Thu Jun 29, 2017 9:59 am

Ann wrote:
sleepy angel wrote:I haven't come to the discussion boards for a while because I was working out what to do and my Neurologist made her decision : I was augmenting pretty bad on Ropinirole which I took for maybe 8-9 months (total of 1mg per PM, cut into pieces to spread through early evening).
My Neurologist told me to stop it and switch to Pramipexole.... take 2 or 3 per PM (.125 each). It's only taken 3-4 months now to be augmenting again.
I know, it was swapping one dopamine agonist for another. I hate that it takes 2 hours to get into my system to help me, and wonder if I ought to take the FIRST one really early (like 4 PM?) --- it would wear off around 2 AM I think. Well, need to experiment...


Sorry, Sleepy angel - I missed this before. If you are augmenting again, sounds like you have a decision to make. The DAs only last 5-6 hours, IIRC. So, if you take it at 4 PM, it will be worn off by 10 PM, sadly.

What did you decide to do?

Sleepy, will your neuro consider taking you off DAs completely? Can you tell her that you would like to stop anything that might be making your symptoms worse because they have become unbearable and you can't function like this, with so little sleep?

We could re-name this thread Need New Neruo...
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

fuz_mind
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Re: tapering off ropinirole

Postby fuz_mind » Sat Jul 01, 2017 2:03 pm

badnights wrote:
fuz wrote: i think i might have been too optimistic about my neuro. he sent me the 2016 AAN guidelines for my "reading pleasure" - he clearly didn't agree with ropinirole 1mg at max dose......
Then perhaps you could give him Buchfuhrer's 2012 paper for HIS reading pleasure. Written by someone who treats a lot of WED/RLS including augmentation and refractory cases. Follow the link in my signature below any of my posts.

I tried wellbutrin and was convinced that it made my symptoms worse, but in all honesty, I only took it for a few days, and I was on a roller coaster from gabapentin anyway (erratically effective and messing with my mood).

My GP sent me to a psychiatrist once, convinced that I needed treatment for depression. She was astounded when she read from his report out loud to me, what he had said to me in person: sleep deprivation symptoms can mimic those of any of the major psychiatric illnesses, including psychoses. I feel the truth of this every time I have a good sleep :)

I'm not sure if the DA withdrawal can cause mood problems, but logic suggests it could make any existing problem worse, whether the existing depression is from sleep loss or something else.

Have you been shopping around for a different neuro? Can you get to a Quality Care Center?


Badnights - it's really ironic (and funny!) that you suggested this because he sent me the AAN guidelines AFTER I sent him Buchuhrer's paper and the 2016 guidelines on augmentation!

my psychiatrist suggested I up the dose because it will help with pain perception as well - I don't cope with the RLS pain very well. I describe it as "unrelentless"; I think it has always been a careful balancing between the clonzapam, tramadol and ropinirole; with zopiclone thrown into the mix. I might have to up the wellbutrin again because the mood is worsening even with an increased dose. I was expecting a lot of pain from the DA withdrawal, but to my pleasant surprise, it hasn't flared up as badly as expected. it's really the sleep and exhaustion that is bothering me.....

i do wonder if i might have been too foolhardy to reduce the ropinirole, especially when my neuro doesn't seem very confident that I will be able to manage the rls.....

my psychiatrist is sensible - she did warn me that wellbutrin doesn't work for all her rls patients; and she was sharp enough to notice that my mood worsens signficantly when my rls flares up

my neuro has gave me a script for propranolol because I now have migraines secondary to the rls;

there are limited options on my end due to the nature of healthcare system in my country. my neuro did suggest that I see his colleague who is a movement disorder specialist.... only to admit that his colleague is more familar with parkinson than rls.... oh well......

fuz_mind
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Re: tapering off ropinirole

Postby fuz_mind » Sat Jul 01, 2017 2:07 pm

ViewsAskew wrote:
SLEEPY ANGEL wrote:ViewsAskew--
Fuz_Mind

I haven't come to the discussion boards for a while because I was working out what to do and my Neurologist made her decision : I was augmenting pretty bad on Ropinirole which I took for maybe 8-9 months (total of 1mg per PM, cut into pieces to spread through early evening).
My Neurologist told me to stop it and switch to Pramipexole.... take 2 or 3 per PM (.125 each). It's only taken 3-4 months now to be augmenting again.
I know, it was swapping one dopamine agonist for another. I hate that it takes 2 hours to get into my system to help me, and wonder if I ought to take the FIRST one really early (like 4 PM?) --- it would wear off around 2 AM I think. Well, need to experiment...


Sorry, Sleepy angel - I missed this before. If you are augmenting again, sounds like you have a decision to make. The DAs only last 5-6 hours, IIRC. So, if you take it at 4 PM, it will be worn off by 10 PM, sadly.

What did you decide to do?



Sleepy angel : when my rls pain flares up at 4pm (which happens frequently enough), I take tramadol to get me through for the next few hours until it's time for my bed time dose before I take the DAs.....

badnights
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Re: tapering off ropinirole

Postby badnights » Wed Jul 05, 2017 7:28 am

fuz_mind wrote: see his colleague who is a movement disorder specialist.... only to admit that his colleague is more familar with parkinson than rls...
Well see him anyway! He might know something about WED/RLS or be willing to investigate, and he might be willing to prescribe a real opioid.

Meanwhile, will your .. umm, whichever doc is prescribing the tramadol and ropinirole - will that one consider upping the tramadol to help deal with the lowered ropinirole?

I don't know a whole lot about your life but I think you did the right thing in lowering the ropinirole, and your doctor's lack of understanding of the horrors of augmentation is beginning to make you doubt yourself.

On another note, I won't be around for a while - I'm gone for 3 weeks in a place without internet. except tomorrow night I should be able to get online. So if I don't reply for a while, that's why.
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

SLEEPY ANGEL
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Re: tapering off ropinirole

Postby SLEEPY ANGEL » Fri Jul 28, 2017 3:15 am

Fuz_Mind
ViewsAskew

Hi--- It looks like the last time I came to the discussion Boards was late June, and you replied to something I wrote Re. my Pramipexole starting to augment or not helping me earlier in the day; I had listened to one of the Webinars where there was information about the half-life of drugs---- basically the Pramipexole was better than Ropinirole which I had quit : the Pramipexole I was SURE was said to take 2 hours to get into the blood stream, but would last about 10 hours. So I figured when I felt rls starting to come around 4 PM, I could take a Pramipexole dose then and it would be good, with additional doses later (7 PM and 9 PM). But sometimes I get rls as early as 3:30 and can't imagine "getting ahead of it" with a 1:30 PM dose?!
Well, I have an Aug.15th appointment w. my neurologist and will see what she suggests. My sister has a friend taking Clonzepam/Klonopin which works like a dream--- maybe I'll inquire about that.... yet, there are so MANY drugs mentioned in the discussion boards that it's hard to know what to consider NEXT...tramadol ?

ViewsAskew
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Re: tapering off ropinirole

Postby ViewsAskew » Fri Jul 28, 2017 4:21 am

If I remember correctly, sleepy angel, pramipexole takes about 90 minutes to work and it lasts about 6 hours....but that is an old memory! Ropinerole works a bit faster, in an hour or a bit longer, but only works for 4-5 hours. Again -- old memory!

The early RLS MAY be augmentation, so if you stopped the DA, you might not need anything in the afternoon.

I would think about other things than clonazepam for now. It helps some, but not the majority of us. Tramadol might be a good option.
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.

SLEEPY ANGEL
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Re: tapering off ropinirole

Postby SLEEPY ANGEL » Fri Jul 28, 2017 10:12 pm

ViewsAskew--

Thanks for your thoughts. Most of the "possible" augmentation is when I want to sit and read; so if I am walking around doing various chores or errands, there's no problem. As I get older and maybe unable to be as active or on my feet for hours, then I'll definitely need to rely on something that doesn't "augment"... I'm looking forward to my Aug. 15th app'mt with my neurologist!

reliefis#1
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Re: tapering off ropinirole

Postby reliefis#1 » Sat Jul 29, 2017 12:03 am

Is it possible to be augmenting from repinirole .25 mg after one week of use? I've read the symptoms of augmentation and I have a few of them. Early onset of symptoms in the evening. Didn't have any RLS symptoms on my arms and upper torso but today I have it. I have gastritis which was under control but now since I started on repinirole the gastritis has returned. I have anxiety and hot flashes. What most worries me is that I also suffer from extra heart palpitations and resently they have increased. I took a small piece of my .25 mg to settle my anxiety and feels much better. But, that means that I have to increase the doze. I don't really want to increase. I have an appointment with a movement disorder specialist in 30 days. I don't know if I want to wait that long before I get off the repinirole. I was on gabapentin 300 mg before my doctor switched me to repinirole. I suffered from constipation and dizziness from the gabapentin. That is the reason my doctor took me off. But I rather go back to gabapentin than take a chance of augmenting on repinirole. I was on clonazepan for 15 yrs before all these medications and that stopped working. Withdrawal from clonazepan was terrible!! Truly, I am worried. My body is very sensitive to these medicines. My quality of life is headed to zero.

ViewsAskew
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Re: tapering off ropinirole

Postby ViewsAskew » Sat Jul 29, 2017 7:47 am

reliefis#1 wrote:Is it possible to be augmenting from repinirole .25 mg after one week of use? I've read the symptoms of augmentation and I have a few of them. Early onset of symptoms in the evening. Didn't have any RLS symptoms on my arms and upper torso but today I have it. I have gastritis which was under control but now since I started on repinirole the gastritis has returned. I have anxiety and hot flashes. What most worries me is that I also suffer from extra heart palpitations and resently they have increased. I took a small piece of my .25 mg to settle my anxiety and feels much better. But, that means that I have to increase the doze. I don't really want to increase. I have an appointment with a movement disorder specialist in 30 days. I don't know if I want to wait that long before I get off the repinirole. I was on gabapentin 300 mg before my doctor switched me to repinirole. I suffered from constipation and dizziness from the gabapentin. That is the reason my doctor took me off. But I rather go back to gabapentin than take a chance of augmenting on repinirole. I was on clonazepan for 15 yrs before all these medications and that stopped working. Withdrawal from clonazepan was terrible!! Truly, I am worried. My body is very sensitive to these medicines. My quality of life is headed to zero.


Steve and I replied to your question in the other thread. Definitely see if you can get to the doctor sooner!
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.

fuz_mind
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Re: tapering off ropinirole

Postby fuz_mind » Sat Aug 12, 2017 10:22 am

badnights wrote:
fuz_mind wrote: see his colleague who is a movement disorder specialist.... only to admit that his colleague is more familar with parkinson than rls...
Well see him anyway! He might know something about WED/RLS or be willing to investigate, and he might be willing to prescribe a real opioid.

Meanwhile, will your .. umm, whichever doc is prescribing the tramadol and ropinirole - will that one consider upping the tramadol to help deal with the lowered ropinirole?

I don't know a whole lot about your life but I think you did the right thing in lowering the ropinirole, and your doctor's lack of understanding of the horrors of augmentation is beginning to make you doubt yourself.

On another note, I won't be around for a while - I'm gone for 3 weeks in a place without internet. except tomorrow night I should be able to get online. So if I don't reply for a while, that's why.



been a while since i came to the boards.... hmmm i just found out that neurologists in my country are not allowed to prescribe real opioids...i will have to see a pain specialist for that..... the healthcare system in my country is just depressing

i haven't been able to go lower than 1mg ropinirole - after 6 weeks of being on 1 mg, my doc is pushing me to go up to 1.25mg again because he is more concern that my tramadol and clonzapam use is too high...

apparently i don't qualify for another iv iron because the numbers are borderlineish low but not low enough. just fighing the system to get a proper iron panel done was a nightmare in itself that i would like to forget :roll:

on a slightly more positive note, after struggling with mood for a long time and increasing of my bupropion to the max dose, I'm tapering it off now because it wasn't helping and I didn't get worse when I reduce the bupropion. my conclusion was that it was probably withdrawal from the tapering off of ropinirole and I actually found some information for my doc

Withdrawal syndrome when discontinuing drug treatment for
Parkinson's disease and restless legs syndrome
The European Pharmacovigilance Risk Assessment Committee, PRAC, decided in
November 2016 to update the summaries of product characteristics (SmPCs) for
pramipexole-containing medicines (Sifrol, etc.) with information that patients
discontinuing pramipexole treatment are at risk of developing dopamine agonist
withdrawal syndrome. Pramipexole is authorised for the treatment of Parkinson's
disease and restless legs syndrome.
Doctors are advised to be aware of the following:
 Withdrawal syndrome may occur when treatment with dopamine agonists
(including pramipexole) is tapered off or discontinued. Symptoms of
dopamine agonist withdrawal syndrome include apathy, anxiety, depression,
fatigue, perspiration and pain. The symptoms could be severe.

Scientific conclusions
Taking into account the PRAC Assessment Report on the PSUR(s) for ropinirole, the scientific conclusions are as follows:
- Dopamine agonist withdrawal syndrome (DAWS)
The occurrence of DAWS is described with other dopamine agonists (rotigotine, pramipexole): such syndrome seems to be a pharmacological class effect for non-ergoline D2/D3 dopamine agonists, and it is largely described in literature. This syndrome is associated with clinical manifestations that can be psychiatric, autonomic, gastrointestinal and sensory. As the MedDRA Preferred Term (PT) DAWS does not exist, it is difficult to find cases on it. A search can be done with PTs such as “drug withdrawal syndrome”, “withdrawal syndrome” and “drug dependence”. According to the data provided by the Marketing Authorisation Holder during the reporting period, at least 23 serious cases of drug “withdrawal syndrome” or “withdrawal syndrome” or “drug dependence” have been reported with ropinirole. In the view of the above, DAWS is considered to be an identified risk for ropinirole. Sections 4.4 and 4.8 of the SmPC of ropinirole should be therefore amended, in order to reflect such risk. Furthermore, in section 4.2 a cross-reference to section 4.4 should be added. The package leaflet should be updated accordingly

badnights
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Re: tapering off ropinirole

Postby badnights » Sun Aug 13, 2017 4:05 am

yup, DAWS is a concern, but is relatively rare. What is even more important for your doctor to know is that for WED/RLS patients, stopping ropinirole causes a period of intensely worse symptoms that are truly torture. The doctor should be ready to treat those symptoms for their duration, which is typically 2-3 weeks, with the first 5 days being the worst.

I fear for you under the care of that doctor, because he does not seem to know something even more basic: that ropinirole causes augmentation of RLS symptoms in most patients, that augmentation can happen in as little as a few days or may take years, and that augmentation can't be successfully treated by increasing the dose because it's the medication itself at that point that is causing the symptoms. The medication that used to work, now makes things worse. For WED/RLS patients, 1 mg ropinirole is as high as one should go, according to some specialists (see Buchfuhrer's paper by following my signature link).

EDITED Aug 17 from 0.25 to 1 mg ropinirole (oops - it's 0.25 pramipexole, sorry, I hope I didn't cause any problems!)
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

fuz_mind
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Joined: Sun Apr 23, 2017 4:27 pm

Re: tapering off ropinirole

Postby fuz_mind » Thu Aug 17, 2017 5:11 pm

I fear for you under the care of that doctor, because he does not seem to know something even more basic: that ropinirole causes augmentation of RLS symptoms in most patients, that augmentation can happen in as little as a few days or may take years, and that augmentation can't be successfully treated by increasing the dose because it's the medication itself at that point that is causing the symptoms. The medication that used to work, now makes things worse. For WED/RLS patients, 0.25 mg ropinirole is as high as one should go, according to some specialists (see Buchfuhrer's paper by following my signature link).



he doesnt think im augmentating thats the problem......

badnights
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Re: tapering off ropinirole

Postby badnights » Fri Aug 18, 2017 4:26 am

Yes, I can tell that he doesn't get it. From what you've said, I would suggest your priority be to find a new doctor because this one might actually cause you harm, since he refuses to acknowledge the existence of augmentation.

And I made a mistake, see edit in previous post
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

fuz_mind
Posts: 59
Joined: Sun Apr 23, 2017 4:27 pm

Re: tapering off ropinirole

Postby fuz_mind » Fri Aug 18, 2017 9:57 am

badnights wrote:Yes, I can tell that he doesn't get it. From what you've said, I would suggest your priority be to find a new doctor because this one might actually cause you harm, since he refuses to acknowledge the existence of augmentation.

And I made a mistake, see edit in previous post


no worries! i did think that u were referring to 0.25mg pramipexole - this board has educated me on rls within a short period of time than i can imagine :)

my doc agrees that my concerns of augmentation is valid...i did attempt to consult a movement disorder specialist --> to my horror he says my rls is sub-optimally controlled and he suggested i upped ropinirole to 1.5mg!

anyway that is another horror moment that i would like to forget :D


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