Attempting to get off Ropinirole - again

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Frunobulax
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Re: Attempting to get off Ropinirole - again

Postby Frunobulax » Fri Jul 12, 2019 12:33 pm

Polar Bear wrote:Ann, My diabetic diagnosis was about 3 months ago though I've been pre diabetic on several previous occasions. Dr offered metformin but I suggested 3 - 6 months to see if I could make a difference myself. Dr said not to go at it hammer and tongs because whatever I do has to be sustainable..


Have you tried low carb diet for a few months, perhaps plus alpha lipoic acid? Metformin can cause long-term side effects, and one of my doctors said "long side effects for one drug can be determined to some degree, but whenever one or two more drugs are added no one knows what's going to happen".

Low carb didn't affect my RLS, but my overall condition got better after a couple of months. Much more energy.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Fri Jul 12, 2019 9:18 pm

Yes, indeed, I've reduced carbs. Though haven't added any supplements.
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

badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Sun Aug 11, 2019 11:47 pm

Oceanwalker wrote:Hello there Beth I was wondering ...If you could tell me which specialist you see in Alberta?? Or if you do ?? Not sure if I have this correct :)
I was going to see a doc in Alberta once too but the waiting list was of course 2.5 years and they would not take my name....I forgot his name as well


Marie,you;ve seen my answer in a different thread (viewtopic.php?p=99348#p99348). It was probablyh Pawluk you were trying to see with the 2.5 yr wait list because I've told you about him before. My advice then (and now) is to say you fall asleep driving when they call you back and ask you that question. Answer all other questions honestly - be clear about how much it has destroyed of your life - but this one question, they don't understand, at least they didn't 10 years ago, that a hyperalertness comes with the lack of sleep, so falling asleep at the wheel is not a reliable indicator of the amount of sleep loss a WED/RLSer suffers from. (I think Pawluk understands, but the screening questions they use to "triage" people do not reflect that.) If you can't lie (I don't know if I could), say you fall asleep in the middle of conversations or something equivalnet that you've done.
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.

badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Sun Aug 11, 2019 11:50 pm

betty wrote:I've been on the 1.25mg daily dose Ropinerole for just over a week and sleep has become more elusive than ever. ...

Strange, I've been starting to feel a bit odd, I guess I could call it my balance. During the night I was doing leg sretches, out to the left, out to the right. Standing on one spot but using the knees as if walking, when I found myself swaying backwards and just managed to right myself. This has happened several times. Not sure if it could be the meds (Pregab) or exhaustion.

Betty, you were probably losing balance from sheer exhaustion. I have been that way. Your post was from a long time ago - have you cut it out completely yet? I would say that it was time when you wrote that post.

Re low carb diet - it might help, especially if you have type 2 diabetes or even insulin resistance; but during this withdrawal period might not be the best time to start it. Low carb in the sense of a diet that allows you to enter nutritional ketosis means you eat maybe 20 or 25 g of carbs a day, no more, and 1 or 2 g of protein per kg of body weight (so if you weight 60 kg you would eat 60 to 120 g protein). The rest of it is fat, making up 65-80% of your total caloric intake. To enter ketosis you can't gorge on protein because protein can be converted to carbs in the body.
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 » Mon Aug 12, 2019 4:24 pm

Beth, I have been on daily 1.25 mg Ropinerole for ages and know that I should have dropped it lower by now.
I have breakthrough symptoms that are most uncomfortable and sometimes take some extra Codeine to help if walking hasn't helped much or if circumstances dictate that I need to be as still as possible, eg recently at a Funeral.

I am not sure where to go from here hence not having done anything.

I take the Pregab morning and evening.
I take the Codeine, 9am 15mg, 1pm 30mg, 5pm 60mg, 9pm 60mg, 3am 15mg.
I take the Ropinerole, 1pm .25mg, 5pm .25mg, 9pm 1mg, 3am .25mg. (having dropped the 9am dose.)

Occasionally if I am busy I will purposly miss a 1pm .25 ropinerole.

Not sure whether to drop the 1pm dose completely. Or to use a pill cutter to split a .25mg between 1pm and 5pm.
Thus reducing the daily dose by another .25mg.

Hmmm... I think I'm going to drop the 1pm ropinerole. That's it, I've talked myself into 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

oceanwalker
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Re: Attempting to get off Ropinirole - again

Postby oceanwalker » Tue Aug 13, 2019 6:30 pm

Hello Beth and Betty Me still on the 1.25 mg of Ropinirole per day
Talked to the doc and hmmm nothing new there She sill does not understand Augmentation
So hmmm
She would like to have me back on 8 Ropinirole per day ( .25 mg each)
I have tried and tried and failed to confince her And NO there is no other doc around that would support any of what I am trying to do
The rest of the doctors are all retired and rarely come in

Still in the process of trying to have my doctor REFER me to Dr Pawluck And this is not working either
I did call his office but they want a referring doctor.. I do not have one

Not giving up !

(all the best)

Marie (Oceanwalker)

badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Tue Aug 13, 2019 6:57 pm

Oh Marie that is insane. IT seems to me that you may be writing off the other doctors too quickly - - - you are currently receiving the worst care possible, so how could any other doctor be worse? Even if you go to one that's a 5-hour drive away, it would be worth it to get a referral to someone decent.
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.

badnights
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Re: Attempting to get off Ropinirole - again

Postby badnights » Tue Aug 13, 2019 7:08 pm

Betty that's good that you're moving on it again. I think if I were in your shoes at this point I might go cold turkey. How long have you been suffering without much sleep? You're wearing yourself out yet you should be as strong as possible for the elimination phase. Good luck!
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 » Wed Aug 14, 2019 10:44 am

Oh Beth, the very idea of cold turkey ran a shiver down my spine. I think I've seen Dr B suggest cold turkey at this dosage but I honestly don't have the strength to do that. When I think how long it took me to build up the courage to start the taper.......

Anyways, today I start to drop the 1pm dose of Ropinerole. That takes me down to 1mg daily. Some folks may think that would have been too slow a taper for them, coming down from the 5mg daily, but so far for me it's been do-able as far as symptoms go.

How long have you been suffering without much sleep?

Sleep was poor before starting Ropinerole because I can recall 'borrowing' some sleeping pills from a friend when I went on holiday and stayed with friends - not wanting to walk the floors if possible. That was 15 years ago UK to Arkansas. While in USA DH saw a tv advert for Ropinerole and I went to GP when I got home.
So, Ropinerole was started about 15 years ago. Just after I moved in permanently with soon to be DH. This was when the definite out of bed during the night scenario really started because I also went from some-shared-overnights to permanently living together, and was trying not to disturb DH by staying in bed and fighting it.

Best nights at present are about 2 hours sleep, up for two hours, back to sleep for 3 hours. I went through a wee spell where I was really angry and sorry for myself and hating the nights so much. At present it's a case of accepting this is how it is. Wake up and get up. No point feeling sorry for myself, walk while reading if necessary, sit and read if ok. Eventually go back hopefully for about 3 further hours, sometimes fractured.

My stance with this Ropinerole taper has been one step at a time, it will be a real buzz when the next step takes me below the 1mg level.
I've no idea how my (new) GP will approach me needing to up the Codeine or change to a stronger opioid as the Ropinerole goes down. Foundation information will definitely be produced.

So sorry that this post has developed into an essay..... what would I do without all of you.

Marie - it is so frustrating to read that your doctor is suggesting you should up your dosage from 1.25 to 2mg. That is crazy.
If you are showing leaflefts that discuss Augmentation with relevant highlights how can she not get to grips with this. She has to have some sense if she managed to qualify as a doctor. It sounds as though she is just not ------- I can't find a suitabl word !!
And as for not being willing to refer you to Dr Pawluck...... I am speechless. What is her reluctance.
Please find another doctor. Beth's post is spot on.
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

legsbestill
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Re: Attempting to get off Ropinirole - again

Postby legsbestill » Wed Aug 14, 2019 8:54 pm

Betty, I haven't been on here in a while and just read back through your recent posts. I can't believe how well you've done - what a fantastic reduction. I see your struggles with deciding which doses to reduce and also notice you saying that you have stayed a long time on 1.25mg. However it has only been 6 weeks and in that time you yourself record that you have moved from a position of anger and frustration to acceptance of the new reduced sleep regime. It sounds to me very much as though you are approaching this in a manner that suits you and your lifestyle. Each reduction will likely bring further privations (all ultimately temporary) but the human spirit is amazing in its ability to normalise and manage seemingly unbearable difficulties. For a different person with a different lifestyle, a cold turkey approach at this stage might be the best option but your system seems to be working for you. I hope that your latest reduction (removing the 1pm dose) is not too traumatic. It is certainly bringing you substantially closer to your goal. Only two more reductions and you will be appreciably under the 1mg mark. It is an amazing achievement and you should take a moment to feel very proud. In a matter of months your current difficulties will be a memory and you will be moving forward into the joy of a dopamine agonist free regime. It is likely that your symptoms will settle down dramatically from their current level and most likely you will not have anything like the problems you have had in the last few years, particularly in terms of the daytime symptoms. Go you! Rachel

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Thu Aug 15, 2019 8:12 pm

*Legs*.... You say that in a matter of months my symptoms will be nothing like they have been. (Can't do the quotes because I'm on Kindle and it is limited). I do hope you are right because my symptoms were 24/7 all those years ago and well before I started any medication. But at least I will be off the dreaded DAs.

Yes, I am proud of myself, my husband and I were just talking about this last night.

We've just had a laugh here...... I said to my husband that I'd like to have your comment in writing and then realized... But I do have it in writing :) :) :)
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

Postby legsbestill » Fri Aug 16, 2019 12:55 am

Betty,
I tried to phrase my post to take account of the chance that symptoms will not recover to the extent one might hope for. A majority of people seem to revert to night time only symptoms once a d/a is discontinued. However there is presumably a less good prognosis if you had 24/7 before ever embarking on ropinerole. Having said that, I imagine you are much better informed now about management techniques and, in particular, the importance of iron. This knowledge is bound to stand to you when managing post-withdrawal symptoms which are likely to be more responsive than the symptoms endured when in the throes of augmentation.

I reiterate, you are doing incredibly well and deserve huge credit. It is a miserable process but you will not regret it.

QyX
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Re: Attempting to get off Ropinirole - again

Postby QyX » Fri Aug 16, 2019 6:47 am

It is really frustrating how an issue like augmentation is made so much worse by incompetent physicians. With access to high potent opioids and Benzodiazepines like Clonazepam or Diazepam I bet almost every patient could quit DAs cold turkey, no matter how high the dose.

Opioids are no magic pills but when it comes to RLS related pain and restlessness in the legs and other body parts, they are in almost all cases incredible effective. It pains me to read that even getting an increase of Codeine can be such a huge problem.

I've been taking high potent opioids in an average dose of about 200 mg equivalent Morphine daily for the past 7 years now. I would be absolutely screwed without them. As far as I know and from what I can tell what other take my dose is significantly higher than of the average RLS patient on opioid.

However my dosage was never a real issue with the prescribing doctors. From time to time I met doctors who were in disbelief that someone could need such high doses just to treat RLS but those were those kind of doctors who in my opinion had no clue how bad RLS can really get. All this suffering is just so unnecessary and could easily be avoided.

Don't give up on this. I am sure that you will eventually will find a doctor who is willing to prescribe more potent opioids. When you tolerate Codeine well, then Morphine would be a great option since Codeine is mostly biotransformed into Morphine anyway. So when you tolerate Codeine, it means you would tolerate Morphine, too.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Fri Aug 16, 2019 10:07 am

QyX- here in UK at the best of times we don't have easy options to change our drs. And even to do so they will only accept a new patient who lives within a 6 miles radius. At present, Because of lack of funding most practices in my area aren't even accepting new patients.
I have no doubt that suggesting morphine would give my Dr apoplexy.

Have no doubt that I will be pushing for something stronger as the situation progresses. I am not afraid to fight my corner.
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 Aug 16, 2019 10:53 am

Polar Bear wrote:QyX- here in UK at the best of times we don't have easy options to change our drs. And even to do so they will only accept a new patient who lives within a 6 miles radius. At present, Because of lack of funding most practices in my area aren't even accepting new patients.
I have no doubt that suggesting morphine would give my Dr apoplexy.

Have no doubt that I will be pushing for something stronger as the situation progresses. I am not afraid to fight my corner.


Would you have the option to see a private Dr by yourself and pay for the visit and the prescription?

Morphine is a relatively cheap drug compared to most other opioids. You probably would need around 1,50 EUR of Morphine per day, maybe even less.

Since in Germany it is very difficult to find a doctor who is willing to prescribe Cannabis, I had to see a private doctor who specialised in Cannabis medicine before my regular doctor was willing to continue the prescription. Yes, it was expensive but after I had two years were everything was only getting worse and worse, I had no other option.


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