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 » Thu Feb 21, 2019 3:48 pm

There I was, as is my usual, crossing many bridges down the road that often never need crossed.

I spoke with an Admin member of staff at my Medical Practice, explained my reasons for not to want to move and to ask if there was room for negotiation. For ease I will call her AM (Admin Member).
AM said she'd take a look and ring me back in 20 minutes.

Good as her word, she was back within 10 minutes.
AM explained that the Administrative Authority overseeing all medical practices had decided which patients at our Medical Practice should get a letter regarding moving to another Medical Practice.
Letter 1 - went to folks living over 6.5 miles distant suggesting they should move to another Practice. As per AM, It cannot be enforced.
Letter 2 - went to folks living over 10 miles distant requesting that they register with another Medical Practice (no choice - they must move).

Fortunately I received Letter 1 and (as per AM) can choose to ignore it and stay at the Practice.
Clearly there has been an error somewhere because as confirmed by Google Maps, I am 14.2 miles distant.

AM says she personally is fully aware that where I live is well over the '10 miles and must leave' limit but that she won't be saying anything.

My own thinking is that when my present address was advised to my Medical Practice many years ago, the information was not forwarded to the Administrative Authority. And they, the Administrative Authority, are using my old address for their calculations which would indeed have been just over the 6.5 miles limit.

I'm saying nothing, and the wonderfully helpful AM is saying nothing.

If you have stuck with this epistle of AMs/Administrative Authorities/Medical Practices/6.5 miles and 10 miles..... Well Done and Thank You
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Rustsmith
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Re: Attempting to get off Ropinirole - again

Postby Rustsmith » Thu Feb 21, 2019 4:47 pm

PB, I am glad to see that for once, an administrative clerical error is working in your favor so that you can stay with your current clinic.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

curqlink
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Re: Attempting to get off Ropinirole - again

Postby curqlink » Sat Feb 23, 2019 8:37 pm

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

I took several months going from 3mg to 1mg. Stayed at that dose for several more months then went cold turkey.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Sat Feb 23, 2019 9:27 pm

Thank you for that information. I'm also going very slowly downwards.
Betty
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QyX
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Re: Attempting to get off Ropinirole - again

Postby QyX » Tue Feb 26, 2019 9:27 pm

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

I took several months going from 3mg to 1mg. Stayed at that dose for several more months then went cold turkey.


How bad was this for you?

Did you have any other drugs to help you?

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Wed Feb 27, 2019 9:02 pm

Just to update on my reduction of Ropinerole. I've had a couple of weeks at 2.5mg ropinerole (well it's actually one of the generics, sometimes I'm given the real ropinerole). Still on the 150mg Pregabalin x twice daily.

Today, when making up my pill boxes for the week ahead I have further reduced the ropinerole to 2mg daily.
The ropinerole is supplied in .5mg pills so that's 4 pills.
To accommodate the way I work my dosing I have to cut one in half. Pretty difficult because of the domed shape so the 'half' is a bit hit and miss.
I'm so delighted to be down from my long standing high point of 5mg daily and 10 pills.

My sleep has found a sort of pattern. Usually I fall asleep easily, I read until I fall asleep. Wake up after about 2 hours and that's me up for about 2, maybe 3 hours. Then back to bed, sometimes into the guest bedroom so as not to disturb my husband, and again read until I fall asleep for a further 4 hours approx. Getting through about 3 books per week at the moment.

I'm not sure whether or not to see how I get on with the current Pregabaline doses of 150mg x twice daily.
I have already managed one reduction without increasing it.
Or do I think of asking my GP to increase it in anticipation of trouble.
I have a feeling he'd prefer to increase the Pregabalin rather than increase my Codeine which is 10 pills x 15mg daily, though I try to manage on 9 pills.

So there we are, it will be interesting to see how the next week or so pans out.

Thank you all for your support, I was so fearful,
It was your encouragement and your faith that got me to bite the bullet and go for it.
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 » Thu Feb 28, 2019 1:55 am

It was your encouragement and your faith that got me to bite the bullet and go for it.


It is amazing that you went for it! I know, withdrawal sucks bad and I personally experienced a few horrible withdrawal from all kinds of drug. Especially stopping antipsychotics after almost 7 years of daily intake was a horrible, a horror show that went on for almost two years, even after I had stopped the antipsychotics. It completely messed up brain and the mild RLS symptoms I had before now became super crazy and severe that I had to be put on potent opioids only a few weeks after the diagnosis.

Anyway, you can do this. With this structured approach, you will succeed. One way or another. It is just a matter of time.

The hardest thing to know when withdrawing from drugs is: when is it easier to continue tapering down or when it is better to bite the bullet and just go for it.

I'm not sure whether or not to see how I get on with the current Pregabaline doses of 150mg x twice daily.
I have already managed one reduction without increasing it.
Or do I think of asking my GP to increase it in anticipation of trouble.
I have a feeling he'd prefer to increase the Pregabalin rather than increase my Codeine which is 10 pills x 15mg daily, though I try to manage on 9 pills.


Here is what I would do: I would go talk to my doctor and ask him for leniency ... so that you can increase the Pregabaline if 150 mg is not enough anymore ... and in case that an increase is not working, ask for the extra option that you then are allowed to increase your Codeine, too.

He might prefer the increase of Pregabaline over Codeine because he is maybe afraid about opioid tolerance issues. However the argument can be made that your opioid dose is relative to what most RLS needs when the situation forces the use of opioids is much higher than your current dose is.

if you take 10 pills of Codeine, each 15 mg per day, that would be a total of 150 mg Codeine per day ... or the same as 15 mg of Morphine per day. I take about 200 mg of Morphine per day and I've been taken a dose in that region for 5 years now. Codeine is the weakest of all opioids on the market. In Germany, a daily dose of up to 450 mg / day is approved (when I remember it correctly) ... so even relative to that, your dose is kinda low.

Personally, I would ask the doctor for whatever would help you best. If I had two options to choose from with the same effect, I would try to get the drug with the fewest side effects.

Good Luck!

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Thu Feb 28, 2019 1:02 pm

Thankyou for your insight. I do know my codeine dose is low,........our GPs are very careful but he has agreed it might be increased.
To be honest, I don't seem to have much in the way of side effects from either codeine (on it about 6 years) or pregabalin (at least not yet).
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 » Fri Mar 01, 2019 1:17 am

It was not too bad tapering from 3 to 1 mg because of how slowly i did it. By that time i was taking Tramadol and i thought it was doing most of the work anyway.

But going off the last 1 mg suddenly was another story. Having a good supply of Norco on hand sure helped me. I wonder if i had cut back to maybe .5 mg? It may have been a little easier.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Fri Mar 01, 2019 10:52 am

curqlink - you did so well. I haven't yet reached the stage where 'it is another story'. However, I will take it slower .. that's the plan anyway.
Betty
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legsbestill
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Re: Attempting to get off Ropinirole - again

Postby legsbestill » Sat Mar 02, 2019 4:03 pm

Polar Bear, I think you should feel very proud of yourself for biting the bullet and going for it. You have achieved an amazing reduction in a relatively short period of time. Even though the withdrawal is so hard, the sense of taking back control from the drugs is an enormous compensation. Having been through a traumatic dopamine agonist withdrawal, I will never let myself get into a situation again where the drugs control me rather than the other way around.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Sat Mar 02, 2019 4:46 pm

legs - you are so right, there is a sense of pride in having some control.
I do feel quite proud, a sense of release, having come from 5 mg down to 2 mg. Well, I'm only on the 2mg since yesterday.

To be honest, It has not been so very difficult so far and I put that down to the Pregabalin. Will give it a few weeks now on the 2mg, see how it goes and whether or not I need more Pregabalin while on the 2mg.
Betty
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ViewsAskew
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Re: Attempting to get off Ropinirole - again

Postby ViewsAskew » Mon Mar 04, 2019 7:22 am

So glad to hear you are down to 2 mg already! And, curqlink, my story was similar to yours. I didn't have trouble from .75 to .125 of pramipexole. But, once I was there, reducing it any further seemed impossible.
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.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Thu May 16, 2019 8:18 pm

I can't believe it, done it again. I typed a very long and detailed post to find that I was timed out and lost it all !!
I won't let that happen again, it'll be a Word Document and then copy and paste.

So here goes, again... :crazy:

As it's been two months since my last post on the Ropinerole reduction I thought I'd update.
In March I'd just dropped to 2mg. After a few weeks I dropped to 1.75mg and so am now ready for a further drop tomorrow, to 1.5mg daily dosage.
This has been done with the addition of Lyrica 150mg x 2 daily. My Codeine has not been increased.

Today I had a double appointment with my new GP. I just had never attended with her before and wanted to chat with her to ensure that she was aware of my RLS medication history and the plan for reduction as (more or less) agreed with my previous GP, same practice but he left. Wanted to be sure that I did not at some time present myself in desperation and find that she 'hadn't a clue'. Happy to say that new Dr had read my file and did indeed want to help.
We discussed the current Lyrica/Ropinerole/Codeine combination and she asked me 'What did I want'. My response.... I want medication support as I further reduce Ropinerole if and when I can no longer cope with my RLS symptoms.
Dr would have preferred that I increased the Lyrica, I'd prefer not to increase it because of negative reports of horrific side effects (and weight gain).
I reminded her that in many years of being prescribed Codeine it has never been increased.
Happy to say that Dr agreed to prescribe Codeine up to the daily max. To date I've been on 10 x 15mg daily, she has prescribed 16 x 15mg daily. I have assured her that I've no intention of increasing my present 10 pills daily until and if, it becomes necessary.

So.... we have a plan, so far. And I feel that Dr is willing to be cooperative, not a walkover but certainly wanting to help.

I am surprised to have reached this low level with only the addition of Lyrica although I am aware of Ann's comment in the previous post about how she was ok until hitting a certain level when it then seemed impossible.

Onwards and upwards, tomorrow it's 1.5mg daily. To drop 25mg will mean missing out my 9am dose. We will see how that goes.

This has been a very wordy post and if you've reached this far i thank you for your patience.
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

ViewsAskew
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Re: Attempting to get off Ropinirole - again

Postby ViewsAskew » Fri May 17, 2019 4:39 am

Great news, Betty!
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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