tapering off ropinirole

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badnights
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Re: tapering off ropinirole

Postby badnights » Wed May 31, 2017 8:59 am

Ah gee. I hate that we have to suffer to teach our doctors. I don't know a way around it. If it was easy to find a doctor who already knew, we could just dump the ones who didn't. But the ones who know are few and far between, and it's actually easier to suffer for two months, lost productivity, lost enjoyment of life, perhaps friendships strained, missed opportunities - all so that the doctor can become convinced of what we already know. Would he give two months of his life? (or her life). I doubt it. They have no idea what they cause. Or what they could prevent.
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

Polar Bear
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Re: tapering off ropinirole

Postby Polar Bear » Wed May 31, 2017 11:31 am

I agree wholeheartedly with badnights about the time it takes to convince and teach our doctors.

All we can tell ourselves is that we are hopefully laying a positive path for the next RLS patient who presents to them.
And sadly, who knows if the next doctor we approach will 'have the knowledge' ..... or the next.
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

legsbestill
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Re: tapering off ropinirole

Postby legsbestill » Wed May 31, 2017 4:34 pm

How frustrating for you. It is bad enough that he/she wants you to keep on a too high dose of ropinerole but to dismiss the falling iron levels ... It really takes the biscuit. The one piece of the puzzle about which there is usually fairly widespread agreement is that iron levels are very important (ok; so there is a minority of cases where it doesn't make a difference but I would have thought it prudent to establish whether a patient is in that minority before dismissing a case where serum ferritin levels are actually falling). Did your consultant give you the figures for your serum ferritin? Depending on what they are I would be inclined to continue to take oral iron notwithstanding your consultant's disinterest.

SLEEPY ANGEL
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Re: tapering off ropinirole

Postby SLEEPY ANGEL » Fri Jun 02, 2017 3:36 am

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...

SLEEPY ANGEL
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Re: tapering off ropinirole

Postby SLEEPY ANGEL » Fri Jun 02, 2017 3:37 am

PS----
I also take 400mg Gabapentin each night.

fuz_mind
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Re: tapering off ropinirole

Postby fuz_mind » Fri Jun 09, 2017 10:29 am

hi all

i have stayed off the board for a while because i haven't been doing too well on the 1.25mg ropinirole and just needing some time to stew on options --> just to maintain my sanity i have increased my clonzapam and tramadol to get through the night

neuro reluctantly agreed to let me stay on 1.25mg on condition that i don't cut it further for the next month until he is back from leave. he didn't know about the 1mg dose recommendation at all...

sleepy angel : i had bad reaction to gabapentin previously and have refused to go back on it despite my doctor's persuasion to start at a very very low dose that most of his patients complain had no effect

on reflection i was really stunned and upset during the consult that told me my ferretin levels at 127 in April is good (which is true for none rls patients) and that rate of decline is not calculated clinically usually. To put it into context, i started at 33; 2 months post iv iron it was pumped up close to 400; 10 mth post iv - 200; 1 year post iv iron it's down to 127 (and i am now eating red meat 3 times per week as compared to before when I don't take it). the percentage saturation has dropped from 32% to 20% within 8 months post iv

the gd news is he is no longer resisting giving me another IV iron if I need it....

I'm now contemplating if i should ask for 2 months of paid hospitalisation leave to go cold turkey off ropinirole.....

badnights, polar bear, legsbestill : yes it is very frustrating to teach the doctors; the only reason why i have stuck with my doc is because he takes my concerns seriously, even if it is not immediately. prior to him, i had seen at least 6 other neuro who have dismissed my concerns as psychosomatic. apparently i am the 3rd rls patient my neuro has seen in his entire career and his other 2 patients' rls were mild. i'm trying to sit with my frustration and remind myself that he was the only doctor who persisted seeing me and finally diagnosed it although he doesn't know how to treat it

the only positive thing that has come out of this.... i actually feel more in control now emotionally with the knowledge I have picked up from here; there was a stage when i was just going along with his recommendations, not getting better and just feeling like my life was spinning out of control.

i am still determined to cut it down gradually, but with medical supervision. :)

ViewsAskew
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Re: tapering off ropinirole

Postby ViewsAskew » Fri Jun 09, 2017 6:51 pm

So many tough decisions, fuz_mind. I am sure other people are in similar shoes, but when I read all the stories here of what we go through, I feel so sad and angry that we have to do all this.
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 » Sun Jun 11, 2017 3:55 pm

ViewsAskew wrote:So many tough decisions, fuz_mind. I am sure other people are in similar shoes, but when I read all the stories here of what we go through, I feel so sad and angry that we have to do all this.



i totaly agree viewskew....we just have to fight one battle at a time.....

Polar Bear
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Re: tapering off ropinirole

Postby Polar Bear » Sun Jun 11, 2017 4:47 pm

fuz_mind ...... fighting one battle at a time

Sometimes I feel like a Ninja with super martial art powers - constantly fighting off 'whatever' with arms and legs flying.... boom - wham - gotcha !!

Well, on reflection, perhaps I'm more of a virtual/emotional Ninja .... I tried to visualize my arms and legs flying and it wasn't a good image, in fact it might not even be physically possible, but you get the gist...
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: tapering off ropinirole

Postby ViewsAskew » Mon Jun 12, 2017 12:06 am

Polar Bear wrote:fuz_mind ...... fighting one battle at a time

Sometimes I feel like a Ninja with super martial art powers - constantly fighting off 'whatever' with arms and legs flying.... boom - wham - gotcha !!

Well, on reflection, perhaps I'm more of a virtual/emotional Ninja .... I tried to visualize my arms and legs flying and it wasn't a good image, in fact it might not even be physically possible, but you get the gist...



:mrgreen:
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 Jun 12, 2017 10:56 am

your current neuro has potential, then. I guess he's worth hanging on to unless one with lots of RLS/WED experience suddenly appears. It would be impossible to work with him if he didn't listen. It's not in itself a bad thing that he takes some time to mull it over and read up on it, except that you suffer meantime. I am having difficulty stringing my thoughts together

I wonder if he will educate himself on augmentation during his month of leave while you're suffering . Can you get hold of some kratom?
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 » Fri Jun 16, 2017 5:06 pm

Polar Bear wrote:fuz_mind ...... fighting one battle at a time

Sometimes I feel like a Ninja with super martial art powers - constantly fighting off 'whatever' with arms and legs flying.... boom - wham - gotcha !!

Well, on reflection, perhaps I'm more of a virtual/emotional Ninja .... I tried to visualize my arms and legs flying and it wasn't a good image, in fact it might not even be physically possible, but you get the gist...


:lol: :lol: :lol:

this is such an amazing description:)

fuz_mind
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Re: tapering off ropinirole

Postby fuz_mind » Fri Jun 16, 2017 5:16 pm

badnights wrote:your current neuro has potential, then. I guess he's worth hanging on to unless one with lots of RLS/WED experience suddenly appears. It would be impossible to work with him if he didn't listen. It's not in itself a bad thing that he takes some time to mull it over and read up on it, except that you suffer meantime. I am having difficulty stringing my thoughts together

I wonder if he will educate himself on augmentation during his month of leave while you're suffering . Can you get hold of some kratom?



he doesnt dismiss my concerns about augmentation, although he still doesn't think that i meet criteria for it when we went through the book together.

well will just have to wait for the blood test again in july to see if i qualify for another infusion

i have some zopiclone as a standby that he has given me if i really am struggling. :)

fuz_mind
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Re: tapering off ropinirole

Postby fuz_mind » Mon Jun 26, 2017 10:46 am

neuro back from leave

i stubbornly tapered down to 1mg yesterday although I don't think i was doing very well in the last month

pain surprisingly got better 2 -3 weeks after cutting down to 1.25mg; but my mood has crashed in a huge way

Did anyone have problems with mood as part of their withdrawal when they tapered off ropinirole? i can't find any information about it.

i was cutting down on my wellbutrin with plans to stop (psychiatrist was convinced my mood was due to lack of sleep after she knocked me out with a one off huge dose of sleeping tablets and my mood lifted after 16 hours of sleep) and i was doing ok until i started tapering ropinirole. my wellbutrin has now been increased for 2 weeks now and the mood is not getting better; and also this overwhelming fatigue that I'm experiencing. i'm now questioning if its part of ropinirole withdrawal. any thoughts or experience out there?

badnights: 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......

ViewsAskew
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Re: tapering off ropinirole

Postby ViewsAskew » Mon Jun 26, 2017 2:54 pm

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?
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.


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