Attempting to get off Ropinirole - again

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badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Fri May 17, 2019 5:37 am

Betty it's fantastic that you've been able to reduce by that much with only the addition of pregabalin. I am so happy that you made the decision and are going thru the process now. If the bad times hit, as you might expect them to, at least you have a GP on board who should be able to manage you thru it. You just have to remember why you need to get thru it - because if you stay on the ropinirole, your sleep and torture will keep getting worse, whereas if you go thru whatever it takes to stop the ropinirole, you will have better sleep and less symptoms. I am SOOO happy you're doing this, and so happy you ended up with a GP who will support 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.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Fri May 17, 2019 9:22 am

Thank you Beth and Ann.
How I wish I had done it a long time ago..... easy said now,
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: Attempting to get off Ropinirole - again

Postby ViewsAskew » Fri May 17, 2019 7:03 pm

Polar Bear wrote:Thank you Beth and Ann.
How I wish I had done it a long time ago..... easy said now,


That is almost always the case, isn't it?
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 » Fri Jun 07, 2019 7:11 pm

Referring back to my post of 16 May when I saw my new GP and she agreed to increase my Codeine allowance to assist my Ropinerole reduction. This is the first ever increase that I have asked for.
This week my prescription was due and should include my increase, in my excitement of getting an agreed increase unfortunately I hadn't checked how many extra I was going to be given.

On Wednesday 5 June I handed in this note to Receptionist C in my Medical Practice.

""""""" To: Practice Manager and Dr X
On 16 May 2019 I saw Dr X who agreed an increase of my Codeine to a max of 4 x 15mg pills x 4 daily. (A max of 16 daily if necessary).

On Friday 31st May I spoke with Receptionist A to confirm that my ‘about to be ordered prescription’ would include an increase in my Codeine. Receptionist A said it does not say on file how many total is prescribed, no need to confirm with Dr, and to just ask for the increase upon ordering.

On Monday 3rd June I ordered my prescription via Receptionist B and asked her to remind whichever Dr who wrote the prescription that my Codeine should include an increase, as per notes on file of 16 May. Receptionist B asks me why I did not speak with the Dr last Friday to confirm all ok for prescription. (Hmmm.... errr.... see comment of Receptionist A.)

This morning Wednesday 5th June, upon collection of my prescription I find is for the usual 280 pills i.e. No increase. At present I would need 13 pills for day to day (nearly coverage). Any breakthrough, movies or long car journeys need extra medication over and above.
1. I am in withdrawal from reducing Ropinerole .
2. The Augmentation will not leave until I am several weeks completely off the Ropinerole.

Please may I have a balance increase in my Codeine, over and above the prescription for 280 that I have received today. This is what I understood from my appointment of 16 May with Dr X.

I do apologise for this communication but feel the need to have it clearly in writing as I have tried twice unsuccessfully in the last week by phone to clarify this change to my Codeine prescription. """"""""


As mentioned this note was given on Wednesday 5 June to Receptionist C who told me she'd pass it to Dr X between her patients at the afternoon surgery and would ring me to confirm she had done this. And indeed I was only home a half hour when Receptionist C phoned with her confirmation.
Ahh... At last the reminder was in Dr X's hands.

Today, Friday 7th, Having received no communication from the medical practice I rang this morning and asked if there was a prescription for my collection. Yep, one at Reception for 100 pills with a note to state that futre prescriptions would be for 400 pills.

Yaaaay.... sorted.
But this was inefficiency. What about the person who isn't able to speak up for themselves, isn't able to persist, who still thinks that the Doctor is God Almighty.

It is a measure of my lack of confidence in Receptionists A and B and in having my message re extra pills carried through, that I did not expect my prescription to be correct on Wednesday and had actually arrived with the above note (in italics) printed out and ready to hand over.

Anyways now sorted, ready to rock 'n roll :clap:
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: Attempting to get off Ropinirole - again

Postby ViewsAskew » Fri Jun 07, 2019 7:44 pm

YAY!
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.

oceanwalker
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Re: Attempting to get off Ropinirole - again

Postby oceanwalker » Sun Jun 09, 2019 5:09 pm

Hello Polar Bear and YaY!!!! for not giving up and YaY!! that you did receive your stated amount of Codeine!!
I am as well decreasing my Ropinirole and on 4 Ropinerole per day right now . I started with 8XRopinirole/Day
This is a long process Awesome that you Did this !! I know this is difficult but DOABLE!
I do receive Codeine pills per month but this is for the pain I experience from other sources
BUT!! I have been using the Codeine Meds for the Augmentation
For me there is no other way and I know 100% my doc would not NOT allow me to take Codeine to withdraw from Ropinerole.
There are many many Docs as we all know who do not have much knowledge about RLS It is as it is :(
We do what we can !

AGAIN GOOD FOR YOU !


Sincerely,
OceanWalker

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Sun Jun 09, 2019 6:08 pm

Oceanwalker you say you are on 4 Ropinerole per day, down from 8 per day. What dosage are your Ropinerole pills?
And what dosage Codeine are you using to help withdraw from Ropinerole.

In a way I was perhaps fortunate that my original GP (who has left) admitted that he knew little about RLS because it was maybe this that allowed him to be receptive to RLS Foundation literature. He had no preconceived treatments. The new GP .... we will see, our relationship is still young, and is she, but so far so good.

I did indeed receive my stated amount of Codeine. I've been prescribed 400 x 15mg every 4 weeks. I like to have pills in small doses so that I can easily adjust dosages i.e. less in the early hours and after breakfast. Increasing later in the day and evening.

Also, don't forget that since starting the Ropinerole reduction I've been using Pregabalin to 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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Location: Northwest Territories, Canada

Re: Attempting to get off Ropinirole - again

Postby badnights » Fri Jun 14, 2019 4:35 am

Yaaaay.... sorted.
But this was inefficiency. What about the person who isn't able to speak up for themselves, isn't able to persist, who still thinks that the Doctor is God Almighty.
I know! I shudder to think of what some people are going through.

Oceanwalker - - you've tolerated your doctor for so long, yet he clearly - even after all this time - doesn't know how to treat you. Isn't there someone else you can see?
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.


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