Attempting to get off Ropinirole - again

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Thu Oct 10, 2019 1:16 pm

debbluebird - that must have been a horrific weekend. Such awful treatment or actually no-treatment while you where there.
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 » Fri Oct 11, 2019 1:47 pm

At my last GP appointment she was at the stage where she felt we needed specialist help......Dr E. (I am already at least on the referral list for 6 months). Yesterday I have contacted Dr E's Secretary and he doesn't do private work. The main private hospital has 4 neurologists who are fully booked and further names are not being accepted until January.

This morning I had call from my GP. She had a conversion with Dr E who suggested I change from lyrica 200mg x 2, to gabapentin and increase the gaba, having weaned off the lyrica.
I am reluctant to do this as I understand that Lyrica is more efficient than gaba. Definitely will do nothing until after my holidays anyway.

However, Dr E told my GP about a new Clinic in one of the City hospitals....a Movement Disorder Clinic.... And I am being referred to it. At last a positive move.

I appreciate my GP. She is trying.
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

QyX
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Re: Attempting to get off Ropinirole - again

Postby QyX » Fri Oct 11, 2019 4:41 pm

A Movement Disorder Clinic!!! That's perfect. This is the absolutely right place to go. They should know about opioids for RLS.

What was the reasoning of Dr E who suggested to change from Lyrica to Gabapentin? Lyrica is the more potent substance and with 200 mg there is still quite some potential to increase the dose, should you tolerate it.

In Germany Lyrica is not approved for RLS but for Epilepsy and some anxiety disorders Drs in Germany can prescribe up to 600 mg per day. Before changing to a very similar medication, it would at least make sense to see if Lyrica is more effective in higher doses. The movement disorder clinic is great ... but that thing with Lyrica and Gabapentin doesn't really inspire confidence.

And wow ... all 4 neurologists in the clinic fully booked ... even with it being private ....

This all sounds like that there is some real emergency with neurologists :-(

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Fri Oct 11, 2019 4:51 pm

Qyx - I think that with the NHS problems and waiting lists, this is why the private neurologists are booked up. Patients could usually have booked a consultation for around £200 and thereafter if the Consultant also worked NHS, the patient could be added to his NHS list. By paying to for the initial consultation many months and often a couple of years were saved in the waiting to see (often the same) consultant under the NHS. My husband did this to have his Gall Bladder removed.

I don't know the reasoning of Dr E and the suggested change from Lyrica to Gabapentin but did tell GP that I preferred not to make any change. In the meantime I will speak with my D-in-law who as a pallitave care prescribing nursing is very familiar with these two drugs. I'm not keen on upping the Lyrica if it can be avoided as it has a reputation for heavy weight gain and this is something I definitely don't need.

In a few weeks I will ring the Movement Disorder Clinic and ask about their waiting list times.
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 Oct 11, 2019 4:56 pm

I hope you don't have to wait too long!

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Fri Oct 11, 2019 4:57 pm

:thumbup: Thankyou
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

debbluebird
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Re: Attempting to get off Ropinirole - again

Postby debbluebird » Fri Oct 11, 2019 6:18 pm

There is weight gain with gabapentin too. I'm hungry all the time. Fighting it everyday.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Fri Oct 11, 2019 7:00 pm

Debs ....as I mentioned previously my d-in-law in very familiar with lyrica and gaba says she is prescribing it/adjusting it up or down
it daily. What she told me is that the med does not put on weight by itself, we gain weight by what we eat, and we have to remember this. Even though we may feel hungry.
Hmmmm.... Tell me that at 3am when I'm raiding the Kellogs Coco Pops !!!
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

Missouriwalker
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Re: Attempting to get off Ropinirole - again

Postby Missouriwalker » Sat Oct 12, 2019 1:41 am

New to this site. I was just wondering if it wouldn't be possible for you contact the Mayo Clinic for some of their brochures that they have on restless leg syndrome concerning treatment and medication? Information like that can be taken to your doctor and that way he can see that you have information from reputable sources and how they treat patients with this disorder. I had a GP who was unable to help me anymore and referred me to a neurologist who I see now. There's so many articles out there that have been written on restless legs and it's medication problems. I took those to my doctors and they prescribe the medication that was suggested. At this time I've had a lot of luck with that. And I'm very blessed that I'm on a program now that works for me. Wishing everyone on here a restful night's sleep.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Sat Oct 12, 2019 5:32 am

Missouriwalker, Thank you for your comments.
The RLS Foundation publishes many brochures on the treatment of RLS. There are also many links on this discussion board to these publications and research. I have printed out many of these and also Mayo Clinic information.

My GP who left the practice last year was very willing to take on board such publications. His replacement is aware of what is required (from these publications) but feels the treatment is now beyond her level and requires the attention of a consultant neurologist. She has spoken with a consultant neurologist in this regard and I have been referred to a Movement Disorder Clinic.
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

oceanwalker
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Re: Attempting to get off Ropinirole - again

Postby oceanwalker » Tue Oct 22, 2019 7:05 pm

Awesome Polar Bear (Betty) Praying all works out !!!

This is a very weird little story here I am about to try to explain
It is good for me I try NOT to understand why? I just accept and count my Blessings

OK Usually I walk around when my legs/arms get very bad and I cannot humanly take it as we all experience OK one day I laid on the couch on my stomach and I don't know why but I did
Anyways it was odd but the RLS/and arms seemed to stop I was watching TV and just turned over. I started to raise my legs from my knees up and down a bit ..not much just a bit Strange as it sounds ...it all stopped and I felt ok Absolutely great compared to being up and walking etc
Anyways I started to do this lately when it happens USUALLY it all stops until I once again get off the couch and walk around etc
I found this odd but accepted it as it stopped the horrific discomfort
This DOES NOT always work.... 8 out of 10 it does
Very weird and I just ACCEPT it and continue on with my day
Not complaining or anything..just sharing
I am still using Ropinirole 4 to 5 per day 0.25 each
Hmmm I thank God for this minor reprieve

Sincerely,
Ocean (Marie)

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Tue Oct 22, 2019 10:52 pm

Ocean..... I do this quite often. Sometimes I'm just weary walking and need to lie down. So it's on my stomach, shuffle down so my knees are at the arm of the couch and the arm kind of supports my lower legs in the air. I can then move them without much effort. It only works when they are not too bad, doesn't take it completely away but helps until meds kick in. And not always. Doesn't help my arms at all.

I'm very glad that it works for you.
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

oceanwalker
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Re: Attempting to get off Ropinirole - again

Postby oceanwalker » Wed Oct 23, 2019 7:11 pm

WoW hi Betty (Polar Bear) WoW AmaZING :)
Itès not much but something right ?
Thanks for sharing Betty !!!!

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Thu Oct 24, 2019 6:54 pm

To update -- I have been using Kratom to help in my weaning off Ropinerole. As I am on the daily max of Codeine Phosphate my GP said she could not prescribe any extra to help me cope with two 4 hour flights when I went on holiday, UK to Malta. She doesn't know that I use Kratom to replace one daily dose of ropinerole and codeine, also sometimes a dose to help with breakthrough. I did not want to risk taking it through airport security. My GP also didn't know that by using the Kratom I had managed to acquire a very small stash of Codeine for emergencies.

I decided that I'd use my Codeine (including stash) as necessary for the flights and on holiday. If it got short before the next prescription I'd have the Kratom and just do my best. I also decided that for the flights I would take one .25mg Ropinerole, over and above my present daily .75mg even though I'm actually weaning off it.

Well... I'm very happy to say that as usual I had been overthinking it all. Everything went very well. Extra Codeine before and during the flights plus the small Ropinerole and not a symptom appeared. My RLS was also pretty well controlled while away. Mind you, we did a lot of walking every day which took care of any 'during the day' symptoms that would usually appear. At night I would spend a couple of hours around 3am out on our hotel balcony watching any activity and reading.

My next step is to further reduce/stop. I am on .75mg ropinerole at present and have been for a long time. My understanding is that although a ropinerole dose of .75mg isn't small, because I've been on this drug for so many years the .75mg dose wouldn't have the same effect on me and that it would be easier for me to cold turkey this last step than it would be for someone on it only a short time.

Cold turkey or further weaning. That is something for me to think about.
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

debbluebird
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Re: Attempting to get off Ropinirole - again

Postby debbluebird » Fri Oct 25, 2019 7:59 am

The first time I tried to wean off mirapex, I found it impossible. Also at the time, no Doctor gave me anything to replace it and I didn't know anything either. A year later they gave me other meds, I stopped the mirapex, but I was over medicated. It took several months before I got straightened out. I was a zombie. At the time there weren't any Doctors who knew what to do. Finally a year after that a new Doctor suggested Methadone. I was then able to reduce and finally stop all the other meds. Five meds to be exact. What a mess.


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