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
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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
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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

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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, and are not medical advice.

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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
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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



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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
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badnights
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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
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Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Fri Jun 21, 2019 8:22 pm

Having been prescribed an increase in Codeine from 10 x 15mg daily to 14 daily, I am taking 12 daily. Together with my 150 Pregab x 2, and my reduced Ropinerole at 1.5mg.
However, even with the increase in Codeine all is not great. Symptoms are more troublesome and oh my, the burning on the tops of my feet and my lower (front) legs. Sleep as always is not good but had a particularly poor run of 2 hrs sleep, next night 2 hours sleep, next night... never made it to bed at all. Not always insomnia as is usual but unceasing crawlies and burning. The burning can disappear for days and then back like from nowhere. Can't hardly bear a bedsheet to touch.

My daughter-in-law (DIL - Prescribing Nurse) suggested taking an extra 50mg pregab, of course the lowest dose I had was 100mg and only 3 of them. My DIL is so supportive.

I've tried twice to speak with my Dr to discuss increasing the pregab even though I have previously kicked against any increase. Part reason for reluctance being what I read on the internet (Yes, I know I should know better and ignore most of what is on the internet - I do know better) of vile side effects and also of 'gaining 60 lbs' etc. My preferred Dr is off until next week and I don't see any point in going over it all with a Dr who is unfamiliar, or even worse.... a locum !! Will get preferred Dr hopefully after the weekend.

So ..... last night having taken my nightly 150mg at 8pm and after talking with my DIL and because I was still walking after three hours, I took another 100mg at 10.30pm.
Well, wowweeee.... I went to sleep at 12 midnight and awoke at 5am, back to sleep from 6 - 8. Can't recall when I last got a 5 hour stretch and a total of 7 hours. (Exhaustion may have played a part). And the burning was absent. What a difference it made to me today, felt like a different person and took myself off for a couple of laps of the local park.

I have 2 capsules left of Pregab 100mg (would have preferred it to have been 50mg) and think I may take them tonight and tomorrow night, on top of my usual dosage. Then none for Sunday night, and hope to speak with GP on Monday. It will be interesting to see if tonight and tomorrow night are as good as last night.

It concerns me a litte - DIL mentioned being wary of toxicity and the effects that this can bring. She treats mainly cancer patients in the last year of life, comfort, dignity and pain free appears to be the goal. I guess not so much worrying about years ahead and 'where would we go from there?'

So last night good, today great, we shall see how the weekend goes.
Betty
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badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Mon Jun 24, 2019 4:50 am

It's good you tried the extra pregabalin. Have you had weight-gain issues on pregabalin or only on gabapentin? Maybe it won't be such a problem.

The burning sounds more like a neuropathy than WED, but maybe it's some weird withdrawal thing ?? Anyway, not surprising that the pregabalin helped it. I hope you get your dose increase and carry on with the taper - - what are you at now, in terms of ropinirole daily dose?
Beth - Wishing you a restful sleep tonight
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ViewsAskew
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Re: Attempting to get off Ropinirole - again

Postby ViewsAskew » Mon Jun 24, 2019 7:59 pm

So glad you had the sleep!

Also - was thinking the same as Beth - is the burning normal for you?
Ann - Take what you need, leave the rest



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Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Mon Jun 24, 2019 8:29 pm

Thank you Ann and Beth
I had the one good night on the extra 100mg Pregabalin and the following two nights although the extra helped with the burning it hasn't cleared it completely. And sleep was also only helped on the first night of the extra, back now to the usual pattern.

The burning like it is at present is taking it to a new level. I agree and did assume it is a neuropathy. There have been tiny indications of it over the years. Actually IIRC it first started about 25 years ago but it wasn't awful and disappeared for years. About 10 years ago there was a worsened spell of a few months when it was on the tops of my feet and then it disappeared again. Reared its head in earnest a few months ago and all of a sudden has worsened. Walking doesn't clear the burning but does ease it, or at least distracts. Of course, lying in bed every sensation is magnified and it was pretty painful at times when touched by the bed sheet. Last night I was out of bed because of the burning even though it is somewhat easier, and not RLS. Perhaps Diabetes diagnosis could entail the burning neuropathy.

Regarding weight and Pregab (I've never ever taken Gabapentin)..... oh I don't know about weight any more. I could eat like a horse but am trying not to. Pulled out summer clothing and I'm definitely up a good dress size. Quite a bag of stuff going to the Charity Shop and some going on eBay. DIL says that in general, medications except for steroids, do not put on weight. It's what goes in your mouth. She says that medications don't just make your body metabolism change and turn everying to fat. Although there could be some fluid. The hunger switch might disappear but that weight gain still depends on how much we eat.

DIL did suggest always referring to pain when speaking with Dr. They understand 'pain' and 'sensations' can fail to get across the enormity of our discomfort. I think we have discussed this at times here on the Discussion Board.

Today my preferred Dr was again not in and so I had a call back from another Partner who listened and prescribed me 200mg Pregab x twice daily. That's an increase of 100mg daily. I don't know if Pregab needs to build up but we shall see how it goes.

My Ropinerole is still at 1.5mg daily and I should be thinking of a further reduction. Don't know whether to drop a full .25mg pill (the smallest dose available) or start splitting it, being dome shaped they end up in splinters and there's a lot of guess work with bits and dust :) Hmmm... maybe I could crush a .25mg pill and cut the powder in two with my credit card .... lol
Betty
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badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Tue Jun 25, 2019 5:44 am

Does your GP have any plans to help you thru the withdrawal with something other than pregabalin? Yes, time to get it over with - but you should have an opioid... or lots of physical and emotional support.

Re gaining weight, yes your DIL is correct but it;s also true that various meds make it almost impossible to control. Look at ICD, who knows but that you aren't being affected by the ropinirole that way, making it substantially harder to not eat stuff?
Beth - Wishing you a restful sleep tonight
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Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Wed Jun 26, 2019 8:21 pm

As I am now attending a different GP in the Practice we are trying to get things a little more settled at the moment and haven't had a big discussion beyond she agreed to increase the Codeine. Then as she was off, another Partner increased my Pregabalin.
Actually it's almost impossible to see the same doctor continuously.

Does your GP have any plans to help you thru the withdrawal with something other than pregabalin?

Beth, I'm not depending solely on the pregabalin, I also have Codeine Phosphate 15mg increased by 4 pills up to 14 daily. At present I'm taking 12 daily as I'd like to show willing that I'm not being grabby over the opioid. There will likely come a time when Codeine isn't enough and I don't know how she will feel about that. There are several Foundation documents on Augmentation and Withdrawal that will be useful and I hope she will be amenable.

Will have to gird myself to reduce further.
Betty
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badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Fri Jun 28, 2019 5:31 am

That's not good, being unable to see the same doc consistently, and I'm impressed that you get anything accomplished with them. This is not an easy disease we have to manage; an actual relationship with a doctor would help.

Re the withdrawal - - we;re behind you as much as we can be.
Beth - Wishing you a restful sleep tonight
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