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

Post by Polar Bear »

Ugh indeed Ann .... I am scraping by on the 12 pills. For some reason my couple of hours wakefulness during the night has now become wakefulness with rls and neuropathy. To have a full dose of codeine at 3am means I give up my mini dose at lunch time and so get earlier twitches. I do have Kratom (not used for some time) but want to try working with the prescribed meds only to know exactly where I stand.
Happy to say my cpap is still providing great sleep of about 7 hours in two shifts.
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

Post by ViewsAskew »

Polar Bear wrote:
Wed Feb 03, 2021 10:30 pm
Ugh indeed Ann .... I am scraping by on the 12 pills. For some reason my couple of hours wakefulness during the night has now become wakefulness with rls and neuropathy. To have a full dose of codeine at 3am means I give up my mini dose at lunch time and so get earlier twitches. I do have Kratom (not used for some time) but want to try working with the prescribed meds only to know exactly where I stand.
Happy to say my cpap is still providing great sleep of about 7 hours in two shifts.
Great about the cpap, but to have a doc that doesn't get just how destructive lack of sleep is...just makes me SO sad that fifteen years after joining this discussion board, we are having the same darn conversations and struggling because our providers put up road blocks.
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

Post by Polar Bear »

Ann, 'road blocks' .... that's a phrase I will remember to use if necessary.
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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Re: Attempting to get off Ropinirole - again

Post by badnights »

How are you these days, Betty? Any resolution?
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

Post by Polar Bear »

Hi Beth. I am still on the regime of the reduced to 12 pills codeine phosphate. Repeat prescriptions at this level have not been a problem (even tho the (new to me) doctor had wanted to reduce my codeine by half). Silly woman, what a suggestion - anyways, I stated fact after fact about WED/RLS and asked how many patients she had treated with severe/augmented RLS.

I am only with this medical practice since January 2021 and have learned that this particular GP is the one that patients don't want to deal with, no personality, no empathy, indeed my sister in law saw her this week on her first doctor visit in 8 years and came out in tears having been made to feel she was 'wasting time' .

Believe me, I am ready for any objection there may be to my codeine regime.
I also still take pregabalin 200mg x 2 morning and evening to treat my neuropathy and as a bonus this should be supporting my WED/RLS.

Fortunately on an unrelated matter I have seen a wonderful GP in the practice and am aware of another who is highly thought of.

At present I usually sleep 2 - 3 hours. Awake for 2 - 3 hours, and then sleep from about 5am for 3 - 4 hours. Sometimes supplemented with a decent nap. This works ok for me.I

I have several other conditions and hate that I take so many medications, there are 14 meds on repeat prescription and 2 that I must request each month - the codeine and the pregabalin. That makes 16. Plus my vitamin C, D, and iron.
Such is life. I'm in as good a place as I can hope for. Some breakthrough that I can work with.

I will add that the best thing I ever did was weaning off the ropinerole with the encouragement and support of all of you.

I'm so sorry, I have rambled somewhat. A habit of mine.
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

Yankiwi
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Re: Attempting to get off Ropinirole - again

Post by Yankiwi »

That sort of GP should go into research. I'm so lucky to have a great one who also has RLS.
With no thyroid or parathyroids, I too take many prescription medicines every day plus liquid B12, magnesium and vitamin C.
I still take .25 ropinerole and a half tablet about once or twice a month. I will never increase it.

badnights
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Re: Attempting to get off Ropinirole - again

Post by badnights »

Polar bear - you never ramble. I wanted to hear those details. I think your new GP must have done a bit of research and learned because of what you told her. Maybe she will turn out to be really good?

Have you ever tried melatonin? I feel that since I've been almost a year without zopiclone or modafinil, after 10 years on both, and all because I started melatonin, maybe it is time I started to evangelize a bit.

yankiwi - any plans to get off the ropinirole? Any signs of augmentation? How long have you been taking r. ?
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.

Yankiwi
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Re: Attempting to get off Ropinirole - again

Post by Yankiwi »

I've been taking ropinerole for probably 10 years but augmented quickly after getting up to about .75mg. Thanks to this discussion board I was able to scale back. I think I augmented fast because I had taken sinemet nightly when my GP didn't understand it was for occasional, not daily, use. I spent hours in the bathroom every night crying and doing Suduko while on sinemet and trying not to wake up my husband. I think that's when I discovered RLS.org.
I also take two x 60mg codeine and 500mg gabapentin every night. Maybe I should be brave and reduce my ropinerole by half but it isn't causing problems for now.
The gabapentin has helped my sleep and symptoms enormously. I can get up to seven hours sleep (out of 11 hours if I have the time to sleep in) but still get up at least once, usually twice and sometimes three times a night for an hour and a half each time.

badnights
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Re: Attempting to get off Ropinirole - again

Post by badnights »

It's not necessary to reduce if it's not causing problems. It can be ok for years in some people - typically people whose iron status is better
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

Post by Polar Bear »

Just a little update.
Yesterday my script for my Codeine was reduced from 12 pills per day to 8 pills per day, without notice or discussion.
I got to speak with the doctor this morning and it wasn't her who had changed the number of Pills down to 8 per day (from 12), it was the in-house pharmacist because he considered the dosage too high and was drawing attention to it. Anyways, doctor talked to me again about if I could manage a further reduction and I said No. That her initial reduction from 14 to 12 had made an impact and that any further reduction would set me way back.
She said I was on a 'massive dose' and 12 would be the maximum. So for the present I'm still on the 12 per day. Phew.

And something else for me to wonder about.
This morning I got a phone call from the Appointments Office in one of the major hospitals in the City. Two years ago my then GP had referred me to the Movement Disorder Clinic. They can provide an appointment at the end of June.

My concern is that they may suggest something different/less powerful than my codeine which would please my GP but definitely not me.
But I don't want a letter going to my current GP saying I refused the appointment. That would look bad.
Appt office is going to email the neurologist that I saw privately last year and see if he thinks the Movement Disorder Clinic would be beneficial.

In the meantime I've talked with J (my my Prescribing Nurse daughter in law) who suggests taking the appt. Tell them that there have been changes since the referral and things are better. (Off the ropinerole and also on cpap). And ask if they are an expert in RLS and have they treated many 24/7 sufferers. If not, then I say that I don't want to waste their time........ as I'm now doing not too badly with my current treatment.

If they say they are RLS experts. - then I say I don't want my meds messed up/adjusted unless you have a magic bullet. And say that my concern is the my GP has caution with my Codeine due to the Chronic Pain Guidelines. And fingers crossed hope that they recommend staying on my current regime or even suggest a different 'cleaner' drug than Codeine (as per J) as Codeine converts to Morphine anyway.

At present I await hearing from the Appointments Office following their receipt of a response from my Neurologist of last year. I wish I hadn't bothered mentioning that and had just gone ahead and accepted the appointment. The initial appointment is likely to be by telephone anyway.
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

legsbestill
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Re: Attempting to get off Ropinirole - again

Post by legsbestill »

Betty, it is so hard that you are having to jump through these hoops and debate the possible negative implications of taking up an appointment with a movement disorder clinic. Actually, it is ridiculous. I am perfectly sure you will be more than a match for any interfering uninformed consultant who tries to mess with your regime without proper justification. I just thought I'd mention, in case it wasn't already in your mind, that it sometimes helps to turn up to these appointments with the studies printed out (in this case about the efficacy of opioids but I think it's also useful to always have the one that links RLS to an increased risk of suicide) and maybe the RLS book with you. All the very best, Rachel

Polar Bear
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Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

legsbestill - nice to talk to you again.
Yes, I would always be armed with documentation and my RLS book. However I would imagine that any appointments at least initially would be by telephone.

I can't say that the consultant at the Movement Disorder Clinic would be interfering/uninformed. Indeed he may turn out to be well versed in RLS. But I am nervous that he would not be and could be more as you describe. We shall see.
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

Post by ViewsAskew »

Sorry I missed this post, Betty! I am with Rachel - ridiculous to have to go through all of this.
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.

legsbestill
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Re: Attempting to get off Ropinirole - again

Post by legsbestill »

You do well to keep an open mind about what the consultant will be like and how well informed. I hope it goes well for you, Betty.

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