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Restless Legs Syndrome

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Ladro profile image
Ladro
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Hi .. this site is the best, thank you

My question is:

I am now completely off sifrol, having weened down from 0.75, withdrawal was horrendous 🥴 I am now taking tramadol to help with this

how long before sifrol is completely out of your body? I want to get down to baseline to see if I can do without meds

I have pulled a muscle in my neck after a fall ( very painful) so went for a lay down mid afternoon, only to be wakened with my RLS 😩

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Ladro
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I've never read how long it takes to completely disappear, how it does that isn't straightforward.

It will depend on whether you took the immediate release or slow release version. It also depends on how much your last dose was and how much remained from previous doses when you tool the last dose.

The immediate release has a "half life" of up to 12 hours. Like most drugs it disappears asymtotically. That means half of it disappears every 12 hours.

As an illustrative example, if there was 44 mcg in your blood, after 12 hours there would only be 22mcg. After another 12 hours 11 mcg, 12 hours later 5.5 mcg, then 2.75. etc.

Theoretically it won't completely disappear until after there's only one molecule left.

Practically however, probably after a few days, there would be so little of it left it won't have any effect.

I believe the usual "wash out" period, i.e. the time given to see how symptoms are without the drug, is 10 days.

Ladro profile image
Ladro in reply to

Thanks so much

I am 4 days without sifrol, hopefully another week will see it gone.

I was on immediate release.

LotteM profile image
LotteM

You have done well and rather quickly too. Now the leu it to stick with it. It will not be so much the washout from the pramipexole but the withdrawal symptoms and the 'baseline' symptoms you will be dealing with for a while. How long withdrawal will take is hard to say, everybody has a different history AND reacts differently. Many people say that from their experience it takes at least about two weeks. But it may stretch into months, although I don't remember people telling that the symptoms were very severe for such a long time.

I hope the tramadol works well. If it does, do not start reducing the tramadol dose to see how your baseline symptoms are until another 10 days at least. I don't know what dose of tramadol you take. If it is high, it may cause some withdrawal effects as well. When I stopped ropinirole I was on tramadol 50mg for a while and didn't experience any withdrawal like effects. But the RLS was ( and is) still bad. And again, we are all different.

Ladro profile image
Ladro in reply to LotteM

Hi & thanks for reply LottiM

I too am on 50mg capsule, I have taken it 3 out of 5 nights, as soon as I felt that flutter in my legs I knew I needed it, the other two nights were good.

the difference between sifrol & tramadol is u can take tramadol on a needs only base.

LotteM profile image
LotteM in reply to Ladro

Actually, you can also take pramipexole (or ropinirole) also on an as needed basis. But, as they were tested for RLS when they were taken daily/continuously, drs usually prescribe them for daily use. Also often twice daily (morning & evening), although with standard nighttime RLS there is no need to take pramipexole during the day. I discussed these issues with Dr Buchfuhrer; he agreed and confirmed.

Ladro profile image
Ladro in reply to LotteM

That didn’t work for me, if I didn’t take them the same time each day, ( as per Drs instructions) the restlessness kicked in big time.

Dopamines are a big no no for me, I never want to go through augmentation again.

As has been said many times, we should be informed of the high possibility of augmentation, we would then be able to make an informed decision.

in reply to Ladro

Yes, I read a very recent article i.e. 2019, that recommended the as necessary use of a dopamine agonist (DA) or L Dopa for intermittent RLS, and only intermittent RLS.

I'll have to re-read it, but I recall it didn't recommend a dopamine agonist for regular RLS at all because of augmentation.

I do recognise that Dr Buckfuhrer is a well reputed expert in RLS and he may have said you can use a DA intermittently, but perhaps he did mean for intermittent RLS.

Or perhaps you can't expect even the best to be right all the time. I do know that when I was taking Pramipexole, there was no way I could have taken it intermittently, as necessary. Or to put it another way, even if I had taken it only as necessary, I will still have taken it every day, since I had RLS every day. The problem is, the only way you'd know if it was necessary was when the symptoms started and I always found that if I took the Pramipexole after symptoms had started, then it was too late and it wouldn't stop the symptoms.

I also forgot to say earlier, that although Pramipexole (Sifrol) may effectively disappear from your body in a few days, that doesn't mean withdrawal effects will stop. Since while you're taking the DA your body gets used to it, after you stop taking it, your body has to "retune" itself to get used to being without it.

I once read that taking drugs that affect dopaminergic function in the reward circuits of the brain, (which DAs can do), can lead to permanent changes so that even after withdrawing from a drug, it can cause problems even after years. Certainly, people who manage to recover from opiate addiction continue to get "cravings" for years. This is because their reward system no longer works in the same way that it did before the addiction and the things which give non addicts pleasure, don't work for an ex addict.

This is possibly one of the reasons that people who suffer Impulse Control Disorder as a result of taking a DA are more likely to get severe DAWS (Dopamine Agonist Withdrawal Syndrome).

Notwithtanding, if you really wanted to see how your RLS is without medication you may have to wait quite a while to be sure withdrawal effects have completely subsided. You'd also have to have stoppef taking Tramadol for a while as well.

Athough I can understand it might be desirable to see if you can manage your RLS without any medication at all, the same article I mention above also says that most doctors don't bother, because symptoms can be so severe. It recommends starting an alternative to the DA before stopping the DA.

I was taking 0.75mg Pramipexole, like you. I reduced it slowly, over about ten months. I had been taking Gabapentin for about 2 months before I even started reducing the DA. I actually found that as I reduced, my RLS improved.

From reading other people's stories, I still find it hard to believe, I even wrote to Dr Buckfuhrer who said I would have withdrawals when I stopped the DA altogether, but I never did.

I didn't get any noticeable withdrawals. There was a couple of occasions when I felt depressed, lasting 2 - 3 days. That might have been withdrawals, but that happens now and again anyway and may also have been due to other health issues I have.

I admire you for trying to see what you will be like without any medication, but sorry, you may have caused yourself a lot of unnecessary discomfort for no benefit.

I'd say if you're still suffering after 3 - 4 weeks, give it up. Try Gabapentin or Pregabalin and be aware, that if you do, it will be more weeks before it gets to be effective.

Ladro profile image
Ladro in reply to

Thanks for taking the time to reply x

Ciduoc profile image
Ciduoc in reply to

I also did not get any withdrawal effects from getting off Ropinerole. However, I started taking Gabapentin while going off Ropinerole.

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