Attempting to get off Ropinirole - again

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Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Tue Jan 08, 2019 6:35 pm

Legs ... How difficult it must have been for you without even Codeine. I applaud you.

A family member is a Prescribing Nurse and I have shown her my Meds regime, the Pregabalin, Ropinerole, Codeine.
She reckons my GP will increase my Pregabalin at 25mg each time. I am now on 3.5 Rop/100 Pregab.

It has been suggested that as I take each new .25mg Pregab, I should drop Ropinerole by .5mg.
This would mean The Ropinerole would eventually be at .5mg when I was on 250mg Pregab. and Ropinerole at 0 if/when on 275 Pregab.

I imagine that at some stage on the downward journey when the 'storm' arrives I will be in my GP Surgery ... in desperate need.... I don't feel just as confident now, as I did previously, about what I call 'reasonable' opioid support. Time will tell.

This step has been many years in the coming.
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: Attempting to get off Ropinirole - again

Postby legsbestill » Tue Jan 08, 2019 7:16 pm

My sleep consultant had me on pregabalin when I was withdrawing from pramipexole but unfortunately it did nothing for my symptoms at the time. She totally ignored my plight when I was without sleep for nearly 3 months after coming off pramipexole even though I contacted her several times. I now wish that I had emailed her hourly every night that I suffered. My GP eventually prescribed oxycontin and I started to recover as soon as I got the legs under control. My symptoms now are unrecognisable from those bad days. I am sure you will not regret seeing this through PB.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Wed Jan 09, 2019 6:50 am

I checked with Dr B and he has confirmed that it is ok to come off ropinerole 3.5mg cold turkey, that he often does this with patients. He called it a moderate dose. But that it would need the heavy guns opioid to ease the path. I will taper.
Thanks for your support.
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

badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Fri Jan 11, 2019 2:44 am

The reason to do it cold turkey is so that it hurts for less time. Remember that if the taper becomes too agonizingly everlasting.
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.

ViewsAskew
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Re: Attempting to get off Ropinirole - again

Postby ViewsAskew » Fri Jan 11, 2019 3:23 am

badnights wrote:The reason to do it cold turkey is so that it hurts for less time. Remember that if the taper becomes too agonizingly everlasting.


As hellish as it is to jump ship, I'd do it again. I did the taper - it actually was OK to a point. But, at some point, it was just endless hell.

Betty, that may be a good way to look at it. If you taper and it's OK, keep tapering. Once you start having hell, just stop.
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.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Sat Jan 12, 2019 7:49 pm

Yes, thanks for that, Ann and Beth.
That's how I see it, more or less. Do the taper until I can do it no longer. That's when I will visit my gp looking to jump and seeking whatever guns he is willing to give me. That bit seems quite far ahead just yet.

I was surprised at the suggestion to go cold turkey from 3.5mg.
Yes, 4mg is the official max but those 'in the know' which includes Dr B, understand that Ropinerole/Requip should be 1mg max. Hence also surprised that my 3.5 mg Ropinerole was referred to as a moderate dose.
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

stjohnh
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Re: Attempting to get off Ropinirole - again

Postby stjohnh » Sat Jan 12, 2019 8:09 pm

Polar Bear wrote:I was surprised at the suggestion to go cold turkey from 3.5mg.
Yes, 4mg is the official max but those 'in the know' which includes Dr B, understand that Ropinerole/Requip should be 1mg max. Hence also surprised that my 3.5 mg Ropinerole was referred to as a moderate dose.


Well, remember that ropinirole is also used for Parkinson's disease. PDR says ok up to 24mg/day for that.
Blessings,
Holland

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Sat Jan 12, 2019 9:08 pm

Yes, Holland. But I didn't think it would be considered a moderate dose with regard to RLS.
Possibly it was meant as a general comment and not specifically relating to RLS.
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

badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Mon Jan 14, 2019 7:26 am

Possibly it was meant as a general comment and not specifically relating to RLS.
Yes, I'm sure that's what he meant.
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.


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