Attempting to get off Ropinirole - again

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QyX
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Re: Attempting to get off Ropinirole - again

Postby QyX » Thu Jan 24, 2019 6:18 pm

I know, Morphine has a bit of a stigma to it. It seems many doctors prefer prescribing either Oxycodone or Hydromorphone even though both drugs are twice and about 7x times more potent when taking orally.

If you can't get Morphine, go for Dihydrocodeine. It is twice as potent as regular Codeine and in most cases has less histaminergic side effects at the upper end of the dose limit compared to Codeine.

Before Methadone was approved to treat patients with opioid addiction, lot's of Doctors in Germany were simply prescribing Dihydrocodeine to keep the addicts away from illicit street Heroine and dirty needles.

Dihydrocodeine is available in almost every country without a narcotic prescription. It would have been my favourite opioid to start RLS treatment but I got Tramadol and then after only 3 days my Doctor decided that he need to put me on Oxycodone.

Maybe you can also print out that Oxycodone / Naloxone study with RLS patients? This study makes a good case why it is okay to treat moderate to severe cases of RLS with opioids. (It was the study done by Prof. Trenkwalder).

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Thu Jan 24, 2019 8:23 pm

I found this report in The Lancet.
Is this the one you mean.
https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(13)70239-4/fulltext
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

QyX
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Re: Attempting to get off Ropinirole - again

Postby QyX » Fri Jan 25, 2019 4:07 am

Polar Bear wrote:I found this report in The Lancet.
Is this the one you mean.
https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(13)70239-4/fulltext


Yes, this is the one.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Fri Jan 25, 2019 2:48 pm

Thank you. I have it now printed out and filed in my arsenal of information. :)
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Tue Feb 05, 2019 12:13 pm

Just to update and refresh, a couple of months ago I started taking the Pregabalin/Lyrica, titrating up to where I am now taking 150mg morning and evening. For the first time in as long as I can remember I am finding a little better sleep. Take the evening dose at 9pm, to take it at 5pm has me dozing off during a movie or some such. Sleep comes for about 3 hours, awaken for maybe an hour, then back over to sleep for 4 or 5 hours.

I don't wan't to tempt fate by expecting too much, and indeed in the last week I had one night where I walked for a full 6 hours, getting to bed at 6am.
However, I will say that the Lyrica does appear calming, in a good way. And no hangover the next day. Alongside titration of the Lyrica I have reduced my Ropinerole daily intake from 5mg to 3mg.

This week I will drop the Ropinerole a little further, maybe by .25mg or .5mg ......... down to 2.75mg or 2.5mg daily while holding the Lyrica still at 300mg daily until I see my GP again regarding the Lyrica and titration.
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

QyX
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Location: Berlin / Germany

Re: Attempting to get off Ropinirole - again

Postby QyX » Thu Feb 07, 2019 10:29 pm

If Lyrica works, it is a pretty good drug. Unfortunately I never tolerated the drug, even though I tried it many times.

Also since you only take 300 mg daily, you still have some wiggle room to increase the dosage in the future should you run into tolerance issues.

Good luck with the Lyrica. I wish it would have worked for me.

stjohnh
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Re: Attempting to get off Ropinirole - again

Postby stjohnh » Fri Feb 08, 2019 3:14 am

Polar Bear wrote:...Alongside titration of the Lyrica I have reduced my Ropinerole daily intake from 5mg to 3mg.

This week I will drop the Ropinerole a little further, maybe by .25mg or .5mg ......... down to 2.75mg or 2.5mg daily while holding the Lyrica still at 300mg daily until I see my GP again regarding the Lyrica and titration.


Betty, I am so happy for you that you are getting the ropinirole dose down, it is an ugly drug, especially at higher doses.
Blessings,
Holland

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Fri Feb 08, 2019 4:35 am

Thank you QyX and Stjohnh. I've taken it down to 2.5mg these last couple of days. These last two evenings have had some uncontrollable symptoms tho this might be coincidence since it seems rather quick to have had a reaction to the reduction.

I am very happy to have got this far without any major issue.
Betty
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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 » Mon Feb 11, 2019 8:58 pm

Sorry to hear about your bad nights, Betty, but very glad to read that you have virtually halved your dose of ropinerole. That is amazing. Go you!

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Tue Feb 12, 2019 12:07 am

Legs - The two bad evenings actually were the evenings and not during the night. (except for one last week that was an all nighter). Generally speaking, I'm happy to say the actual nighttimes have been improved since starting the Lyrica.

I've ordered my next prescription at the same 150mg x 2 dosage of Lyrica, didn't contact my GP to discuss taking it up further even though I've this week reduced the ropinerole down to 2.5mg. I'd like to see if I can take this 2.5mg dose without any negative issue. If it does become difficult on the 2.5mg I will contact my GP regarding upping the Lyrica.

Part of my reasoning for not upping the Lyrica is that I came across a web site that was anti Lyrica/Pregabalin and the posts with regard to side effects were quite worrisome. I am of course aware that this will be where posters are more likely to be those who have suffered the worst of the possible side effects.
Happily I don't appear to have any of the unwanted Lyrica side effects and I've been told that if I'm not showing them by now, it's a good sign.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

curqlink
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Re: Attempting to get off Ropinirole - again

Postby curqlink » Tue Feb 12, 2019 5:23 am

Glad to hear Lyrica is working so well for you. I started taking it a few months ago after i went off off a 3mg dose of ropinirole. No side affects so far. 100 mg. twice a night seems to do the trick for me. I've always suffered from insomnia. It used to take me 1 to 2 hours every night to get to sleep. Now its usually more like a half hour and i'm out for at least 7 hours. Before Lyrica it was maybe 5 or 6 hours sleep on a good night.

I rely mostly on Tramadol and a small .25mg dose of Ropinirole to control my symptoms of rls. But there is no doubt in my mind that Lyrica is indirectly helping alot.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Sun Feb 17, 2019 7:50 pm

curqlink - how good to hear that you are in control and feeling positive. Did you wean yourself slowly downwards off the ropinerole.
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

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Sun Feb 17, 2019 8:14 pm

Yesterday I received a letter from my Health Centre who I have been with for 45 years. The last 15 years I have lived outside their catchment area but they agreed to keep me registered. The catchment area is 6.5 miles. I am 12 miles distant. I have always preferred to stay with these doctors with whom I have a reasonable working relationship and have found to be helpful.

The letter advised that a GP (my main GP) is leaving and it has not been possible to find a replacement. Also they still have not filled the vacancy left when a GP left last summer, 9 months ago. Thus, they are down 2 GPs. This leaves 5 GPs.
The Practice is now requesting that anyone outside the 6.5 miles should find a new doctor.

Now.... there is a Medical Practice just a 10 minute walk from my home which is heavily oversubscribed, although a new 'all bells and whistles' practice is on plan and expected in about 5 years. The present Practice gets a lot of negativity from patients about waiting times for appointments etc. but I really do think that they are all much the same. As I am within their catchment area they are obliged to accept me if I ask.
There is also another Medical Practice about 7 miles distant which has a good reputation and I could give that a try though they may not have me as I am likely to be just 'outside'.

Tomorrow I am going to telehone the practice manager and ask if there is any room for negotiation. i.e. I am no spring chicken, I've been there 45 years, I am at a critical stage in drug management and would feel very vulnerable going to another Medical Practice at this time. If they still say I have to move I will ask if I can have a temporary 'stay of execution' until this particular issue is resolved. There is another younger doctor that I've seen on occasion regarding rls and she is not totally unaware of rls.

If there is no negotiation at all, I will ask for a referral to a Neurologist. I will lay it on the line with that Neurologist explaining that I am afraid of a new Medical Practice deciding to .... adjust my medication without taking my views on board, change my medication i.e. decide that for purposes of economy they might change me - for example - to gabapentin from Lyrica.
I will ask the Neurologist if he will provide a treatment plan (discussion with myself) regarding coming off the ropinerole..... confirm that the drugs I am on at present are indeed the result of much trial and error and should be adhered to. I will ask that he advises I will need support in getting off the ropinerole and that this is likely to need increased opiod medication..... If the Neurologist will provide this I would think that a new GP (if I have to have one) will be pretty much obliged to follow the advices of the Neurologist.

Anyways, these are my rantings today, we will see how a discussion with my current Medical Practice pans out.... Can I Stay or do I have to go.
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

QyX
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Re: Attempting to get off Ropinirole - again

Postby QyX » Mon Feb 18, 2019 1:26 am

Good luck to you

ViewsAskew
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Re: Attempting to get off Ropinirole - again

Postby ViewsAskew » Tue Feb 19, 2019 7:22 am

Yikes, Betty.
Ann - Take what you need, leave the rest

Managing Your RLS

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