Restless Legs Syndrome (RLS) Discussion Board

The pregabalin at 200mg x twice has helped the burning and it is much less.

It is now time to reduce the ropinerole again and I am in a quandary. The Dr leaves it up to me. My reduced dosage is 1.5mg total. At present it is .....

9am..... I dropped this .25 dose
1pm .25
5pm .5
9pm .5
3am .25. = total 1.5mg

I'm considering how to reduce further. To drop another .25 dose
would leave a long time without a dose. The .5s are at a time when symptoms will be strongest. If I could halve a .25 dose I'd do that on the 3am dose. The shape doesn't lend itself to doing this with any accuracy but I could just guess with the slivers and dust.

Perhaps just go for it and drop to .25 at 5pm.

Any suggestions???

I would be inclined to do what you are suggesting. I think getting the 0.5mg doses down to 0.25mg would be my first steps.

Holland, I thought of that, then thought of how the .5mgs are at the time most needed.
I do have respect for your opinions... and opinions are what I am looking for, it is an idea and I do have a a script for 16 x 15mg codeine per day whilst currently only using 14 of them.

Say I dropped to .25mg at the 5pm dose, I could try dropping one of the (2) codeine at lunchtime and using it as an extra if needed at 5pm. thus perhaps still keeping to the 14 daily.

It's all about playing about with what we have.
Thank you, that is certainly worth considering.

Betty, This is a difficult problem and probably best answered by the experts that have lots of experience with tapering off DAs. It seems to me part of the problem is trying to decide if the goal is getting off the DA ASAP, or minimizing the torture of the withdrawal process. Most of my knowledge of this is from reading thousands of posts on this board, coupled with the twice getting off DAs myself. It seems to me that no matter what you do, it is going to be difficult. My suggestion of getting the 0.5mg doses down first rests somewhat on my theory that high doses whip the dopamine receptors so much that there may be permanent damage, therefore the long term prognosis MAY be better by getting those down more quickly than stopping the 0.25mg doses. But I don't really know.

An argument can be made also for getting off the daytime doses first. Since your dopamine receptors are being stimulated by the DA that never currently gets out of your system. It could be that having a longer period in which the receptors are not stimulated (IE, eliminating the daytime doses first) may allow the receptors to recover faster than tapering the 0.5mg doses first.

BTW, I agree with you and Beth, the foot burning is almost certainly neuropathy. Opioids are notoriously poor at treating that kind of pain. Gabapentin and pregabalin are much better.

It's not easy knowing which is the best way to tackle it.

IIRC it was Ann who at a time was using a razor blade to shave tiny amounts of DA as she got really low in her weaning process. (Forgive me Ann if I've got that wrong).

I'll start with dropping the 5pm dose to .25mg and take it from there. I have quite a busy lifestyle with commitments and a quick withdrawal with manic symptoms ....... don't know how I'd cope.

From today I am taking one of my two 0.5mg ropinerole doses (5pm) down to .25mg.
This means any doses I am taking are now all .25mg except for the 9pm dose.
1 x dose @ .5mg, 3 x doses @ .25mg, 1 x dose cut out altogether.
My ropinerole daily intake is now 1.25mg.
Slowly, Slowly, Catchee Monkey

Wow, that is a huge decrease, Betty. How is it going?

Ann, it honestly, so far, hasn't been too bad.
The Codeine has just been increased and Pregabalin was added a few months ago.
These adjustments must be helping for me to have gotten though it this far - because whilst reducing the ropinerole my RLS symptoms haven't become very much worse.

Unfortunately my random neuropathy that was not a great problem has now become a problem. Probably coincidence and nothing to do with RLS. A few days ago I addended the Diabetic Podiatry Clinic on a rountine visit and they've confirmed with tests that I have now reduced feeling in my feet/legs. Happily the aforementioned Pregabalin is also helping the neuropathy.

I'll give it a couple of weeks and then see where to make the next ropinerole reduction.
Don't get me wrong, it's not easy, but that's just because RLS isn't easy.

Polar Bear wrote:Ann, it honestly, so far, hasn't been too bad.
The Codeine has just been increased and Pregabalin was added a few months ago.
These adjustments must be helping for me to have gotten though it this far - because whilst reducing the ropinerole my RLS symptoms haven't become very much worse.

Unfortunately my random neuropathy that was not a great problem has now become a problem. Probably coincidence and nothing to do with RLS. A few days ago I addended the Diabetic Podiatry Clinic on a rountine visit and they've confirmed with tests that I have now reduced feeling in my feet/legs. Happily the aforementioned Pregabalin is also helping the neuropathy.

I'll give it a couple of weeks and then see where to make the next ropinerole reduction.
Don't get me wrong, it's not easy, but that's just because RLS isn't easy.

Darn it! Did you know you were diabetic? Or is that a new diagnosis? At least the pregabalin works for both!

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..

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..

Good point!

Your slow taper seems to be working for you. Fingers crossed. When the time comes to bite the bullet, don't worry about your commitments and how you would cope. You will cope like a champion. Simply shut down for a number of days, if necessary. Betty comes first in this, otherwise you're no good to anyone.

Thank you Beth and Ann.

The .25mg tablet does not cut easily.... as I get lower.
Yes, Biting the Buller.

To "bite the bullet" is to endure a painful or otherwise unpleasant situation that is seen as unavoidable.[1] The phrase was first recorded by Rudyard Kipling in his 1891 novel The Light that Failed.[1]

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
Anyways Thanks;) Marie (Oceanwalker)

I've been on the 1.25mg daily dose Ropinerole for just over a week and sleep has become more elusive than ever. Example = Last night I eventually fell asleep around 4.30 having paced for hours and then taken extra Codeine. Up again at 6am with one leg having symptoms. I've just taken my morning meds from which the Ropinerole dose has been removed completely so took an extra Codeine to help.

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.

Aghh !! I came on to edit this post, nodded off with fingers on keyboard and deleted half the post.
Anyways, randomly nodded off in the dentist's waiting room yesterday as I looked at a magazine.

It's 8.45am, I might have a wee lie down on the sofa and have a doze.... if this leg would just settle long enough for me to do so.