How long to wean off ropinirole?

Use this forum to discuss any issues associated with Augmentation
zeefy
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Joined: Mon Dec 10, 2018 3:55 am

How long to wean off ropinirole?

Postby zeefy » Tue Jul 02, 2019 4:14 am

I have been on 3 mg of ropinirole for a year and am experiencing augmentation. It no longer works at all. How should I wean off and how long will I be unable to sleep? This is torture. I want the quickest path

stjohnh
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Location: Palo Alto, California

Re: How long to wean off ropinirole?

Postby stjohnh » Tue Jul 02, 2019 1:30 pm

zeefy wrote:I have been on 3 mg of ropinirole for a year and am experiencing augmentation. It no longer works at all. How should I wean off and how long will I be unable to sleep? This is torture. I want the quickest path


Hi zeefy, Sorry you are having problems. Quickest, and probably causes less total agony, is to just stop it. That said, be prepared for the worst couple of days you have had, worse than anything you have had up to now. You will likely get NO sleep for 1-2 nights (not even 5 minutes), then slowly increasing amounts of sleep for a week or so. During the first 3 days or so you will be VERY tempted to think "I just can't stand this, I'm going to take a ropinirole anyway." Don't do it, it will just prolong the inevitable.

This can be made somewhat easier if you use an opioid or kratom during this phase, but it will still be very difficult.

You must also have in mind a plan for what to do after your withdrawal phase. Gabapentin/Lyrica? (likely not strong enough to be used alone in your case). Opioids? Do you have a doc that will prescribe them? Neupro patches? May work for a while, but the likelihood of rashes (50%) or re-augmentation is high.

Additionally, consider that IV iron is the only treatment that has a good chance of getting you off the other classes of RLS meds, all which have significant side effects.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood tests doctors usually do (ferritin test) to check for low iron only check for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

zeefy
Posts: 17
Joined: Mon Dec 10, 2018 3:55 am

Re: How long to wean off ropinirole?

Postby zeefy » Tue Jul 02, 2019 7:44 pm

Thanks Holland! How often do people need IV iron treatments?

Polar Bear
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Re: How long to wean off ropinirole?

Postby Polar Bear » Tue Jul 02, 2019 8:43 pm

I am weaning off ropinerole entirely differently that Holland has suggested. I've been weaning for about 6 months, starting at 5mg daily and as of tomorrow I will be down to 1.25mg daily.

If you are brave enough Holland's suggestion is the way to go, get it over and done with.

From my own experience, my reduction has not been too much different from my long standing augmented state, having had Codeine and Pregabalin to help with the reduction but it has taken a long time. It is likely to get more difficult for me as the dosage is now getting pretty low.

If you find yourself a Candidate for IV treatment it could well be your answer. Several members have taken this route and Holland is well versed in this regard. Good luck.
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

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: How long to wean off ropinirole?

Postby stjohnh » Tue Jul 02, 2019 10:08 pm

zeefy wrote:Thanks Holland! How often do people need IV iron treatments?
The first treatment usually lasts a few months. Subsequent treatments longer. Average after the first one or two is about a year, up to two years. Not everybody responds, some have no improvement at all.

This is the main IV iron thread if you want details. http://bb.rls.org/viewtopic.php?f=4&t=10227
Blessings,
Holland

zeefy
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Joined: Mon Dec 10, 2018 3:55 am

Re: How long to wean off ropinirole?

Postby zeefy » Mon Jul 08, 2019 9:09 am

I weaned down over 4 days and am now on my 5th night if no ropinirole and I feel tortured still. 9 days total of no sleep and tonight was worst night ever. I thought the worse would be behind me by now. I have doc appt tomorrow and don’t know what I’ll do if she denies me opioids. I am the walking dead at this point

Polar Bear
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Re: How long to wean off ropinirole?

Postby Polar Bear » Mon Jul 08, 2019 4:07 pm

You have got this far, 9 nights of no sleep. Well done. You may have a few rough days/nights still ahead of you. With luck you will soon start to get a little sleep.
Have you anything to take in the way of support. Pregabalin/Gabapentin may help but won't be enought on its own. It would make a good cocktail with Pregabalin.

The RLS Foundation site will have a Brochure on Augmentation but I believe you will need to be a member to access it. If you are not already a paid up Member it is worth joining the Foundation to have access to Brochures. There are also Brochures that are free, take a look.

viewtopic.php?f=4&t=9005
This link is to a thread about Augmentation, you may have read it, the first post provides excellent information and is written by one of our Moderators. It may help you to explain to your Dr.
Make sure you stress how difficult this is, torture is not too strong a word. Make a few notes of what you want to say.
At the moment life as known by 'normal' people does not exist for you and it is in your Dr's hands that he help 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

zeefy
Posts: 17
Joined: Mon Dec 10, 2018 3:55 am

Re: How long to wean off ropinirole?

Postby zeefy » Tue Jul 09, 2019 6:42 pm

Last night, I fell. I woke up on the floor. It was horrific.

I went to my primary and she said "all I can do is perscribe Ropinirole. Go to the ER".

I went to the ER and they gave me 900 mg of gabapentin and told me to see a specialist.

Both refused to do blood testing or iron infusions.

What should I do? Just take the gabapentin until I finally get an appt. with a specialist next month? I'm afraid I'll fall again. Any advice would be appreciated. These doctors are horrendous.

stjohnh
Posts: 850
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: How long to wean off ropinirole?

Postby stjohnh » Tue Jul 09, 2019 7:26 pm

zeefy wrote:Last night, I fell. I woke up on the floor. It was horrific.

I went to my primary and she said "all I can do is perscribe Ropinirole. Go to the ER".

I went to the ER and they gave me 900 mg of gabapentin and told me to see a specialist.

Both refused to do blood testing or iron infusions.

What should I do? Just take the gabapentin until I finally get an appt. with a specialist next month? I'm afraid I'll fall again. Any advice would be appreciated. These doctors are horrendous.


I'm sorry you are having such troubles. Your sleepless night spell is certainly longer than most. Most get at least 1/2 hour sleep by the 3rd night, and many more than that. The fall is very worrisome. Is this frequent for you? How did it happen?

What to do??? Difficult problem. Do not take ropinirole, no matter how tempted you are. Certainly continue the gabapentin. I think I would get some kratom and medical marijuana. If you pay for expedited delivery, you can probably have the kratom by tomorrow. The kratom helps both urge to move and the sleep problem. The marijuana mostly helps the sleep. How long it takes to get it depends on the state you live in.

Here is a link to a kratom supplier. For $23 shipping +$29 for 112g, you can have it tomorrow. This is not the cheapest way to get kratom, but this company is reliable and offers expedited shipping.
https://www.phytoextractum.com/buy-red-vein-borneo-kratom-powder-online?zenid=05cdubspng22cvi4tt79oiohk2
Blessings,
Holland

zeefy
Posts: 17
Joined: Mon Dec 10, 2018 3:55 am

Re: How long to wean off ropinirole?

Postby zeefy » Tue Jul 09, 2019 9:14 pm

Thanks so much for your feedback. I fell asleep while pacing the floor, which is how/why I fell. I don't know much about kramdon - need to look into that more. Thanks so much for the link! All the input is so helpful.

stjohnh
Posts: 850
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: How long to wean off ropinirole?

Postby stjohnh » Tue Jul 09, 2019 9:17 pm

zeefy wrote:Thanks so much for your feedback. I fell asleep while pacing the floor, which is how/why I fell. ...


YAY!! Not for the fall, but because you fell asleep. You are on the way to better.
Blessings,
Holland

zeefy
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Joined: Mon Dec 10, 2018 3:55 am

Re: How long to wean off ropinirole?

Postby zeefy » Tue Jul 09, 2019 10:36 pm

Oh, I wish that were true. :) I have always been tired. And I've never had a problem feeling "okay" as long as I'm on my feet, walking. If I could fall asleep while laying down = then I'd feel like I was on the road to getting better.

ViewsAskew
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Re: How long to wean off ropinirole?

Postby ViewsAskew » Thu Jul 11, 2019 8:28 pm

zeefy wrote:Last night, I fell. I woke up on the floor. It was horrific.

I went to my primary and she said "all I can do is perscribe Ropinirole. Go to the ER".

I went to the ER and they gave me 900 mg of gabapentin and told me to see a specialist.

Both refused to do blood testing or iron infusions.

What should I do? Just take the gabapentin until I finally get an appt. with a specialist next month? I'm afraid I'll fall again. Any advice would be appreciated. These doctors are horrendous.


So sorry you fell. Stopping these DAs can be truly brutal. I remember falling asleep while standing or in yoga poses. No fun at all. Especially when that is the only sleep you get!

Hope you turn the corner soon. The timeline varies so much - some people are OK after just 4 days. Most, I'd guess take 10-15 before they see a difference. Even then, it can take months to have it be a LOT better.

When you do not have a doctor in your corner? That is when it really is problematic. Have you asked the doc's office to put you on a waiting list for cancelled appointments?
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.

zeefy
Posts: 17
Joined: Mon Dec 10, 2018 3:55 am

Re: How long to wean off ropinirole?

Postby zeefy » Thu Jul 11, 2019 11:59 pm

Thanks Ann!

Do you find Yoga helps?

I have a neurologist appt. in October (on waitlist), and hemotologist appt. in 2 weeks. Hoping to get iron IV treatment.

zeefy
Posts: 17
Joined: Mon Dec 10, 2018 3:55 am

Re: How long to wean off ropinirole?

Postby zeefy » Fri Jul 12, 2019 11:12 pm

moving to other topic


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