I’ve been weaning off of Mirapex for 2 1/2 weeks now, down to breaking a .125 in half (using half) and using 150 mg of Lyrica along with oxycodone and an iron pill before bed.
Last night I assumed I could finally stop taking any Mirapex (since 1/2 a pill seemed so small). My legs jumped horribly again though.
Anyway, if I could hear anyone’s experience or get more advice...
I also wrap my leg tight to help with the strange dull electric pain that runs up the tender underside of my foot up my leg....
This is awful. I would NEVER have started this if I had any idea.....
Well done for getting to this point. You are nearly there. However, Judging by the experience of others you can expect about 2 weeks of greatly exaggerated symptoms and very little sleep notwithstanding the low dose you are reducing from. The only thing that will help in this intense period is an opioid - probably a strong one such as the OxyCodone you have. Lyrica may ultimately work to control your legs but not during the immediate withdrawal period.
When I was going through the bad phase I did a lot of leg stretches and yoga poses and I also arranged to have housework or domestic reorganization tasks to do through the night. But really it is the oxycodibe that will help you most.
I did become dependent on oxycodone - both in the sense that I relied on to treat my legs and also in the sense of a physical addiction. After a while I discontinued it. It was not fun to discontinue - I wouldn’t do it lightly - I was on 30mg a day which is the max dose for rls and coming off that was tough. However it was nowhere near as bad as the torture of withdrawing from pramipexole.
If the worry of the pain of withdrawal is an anxiety, it could probably be avoided by taking a low-ish dose of the drug and -probably more importantly - not taking it every day. Maybe once every two or three days during the withdrawal process to allow at least some sleep. Then after the worst is over - within 2 or 3 weeks - discontinue the OxyContin entirely in favour of another drug such as pregabalin.
My rls is such that I am dependent on pharmaceutical intervention. Accordingly, I am dependent on whatever treatment I elect for. It so happens that some of the treatments that are effective are also difficult to discontinue - in particular the opioids. I expect (sadly) to require some form of medical intervention for my rls for the duration so the discontinuance aspect only arises if I decide to change meds.
You’re nearly there so keep going and don’t be tempted to try even a tiny amount of pramipexole to get you through.
As ID says, you have another 2 weeks of leg jerking and little or no sleep. Compression socks, zolpidem sleep pills, cannabis - these all helped a little during withdrawal.
Once through it, the RLS will settle more BUT for some ( like me) it can take over a year to find a suitable meds regime that gives you sleep and RLS free nights.
Dopamine agonists are evil ( although we all thought they were miraculous at first).
Evil is not a helpful word to use for sufferers who are finding relief from these drugs after years of horrendous RLS. Of course we all need the facts and the pros and cons too.....
I do also use the word “ miraculous “ about DAs. If you read the posts on the forum you will see at least one person a day suffering Augmentation and withdrawal from a DA and desperate for help. Those having success on a DA and relief from RLS are less likely to be reading this forum.
I stand by my description though having been through a hellish time on Ropinirole and a withdrawal that nearly killed me.
If drug companies and doctors were more knowledgeable- Augmentation could be avoided by prescribing the lowest possible dose.
We all once found relief of our horrendous RLS as well. I had 10 years. Then it turns on you...I’m glad you will have this support if/when it happens to you.
Hi TaraDovey, you mention the underside of your foot. I did some research and went to my foot doctor with it and it was about Neuromas. It is in the foot and the study said that those with Neuromas could have restless legs. The doctor said that was true and that they can give you injections to help with rls and the neuroma. I am starting a series of 10 injections to deaden the nerve in my foot that can cause the neuroma and rls. It is NOT a cure, but it is supposed to help. I too am going off Mirapex and it is a tough road but I am hoping that these injections will help easy the rls while I do it. My doctor said if anyone has a doctor that wants information about this, she would be happy to speak with them.
My daughter was being treated with physiotherapy for pain on the underside of her foot. Eventually a sports physiotherapist diagnosed Plantar Sclerosis. Might be worth checking that out
Keep up the good work with your taper and substitution up to this time. I have no advice on what to do, only to give some insight into how the powerful the apparently low dosage of Mirapex is that you are now using (0.0625mg or 1/2 of the 0.125mg tablet).
I find that at these low doses, that it's easier to express the dose as a microgram.
Thus 0.0625 mg = 62.5 micrograms.
I commenced on Pramipexole at 0.03125 mg/night (that's one 1/4 of the 0.125mg tablet) (also 0.03125 mg = 31.25 micrograms) and was getting good control of the Periodic Limb Movement Disorder symptoms I have.
This is an extremely low dose as far as any known drug is concerned. It is more potent than LSD which produces the hallucinogenic state at a minuscule 100 micrograms (0.1mg)
My point is that even half of the 0.125 mg tablet is still actually quite a large dose as far as it having a noticeable effect on our nervous system. Hope that helps clarify why you may be still having problems at your current dose.
I only recently came on this site through curiousity and by the standards of this site I am the rare lucky one who has no real problem to complain about with Pramipexole (Mirapex).
I find it frightening. It's been suggested that I stop taking Pramipexole. OK, I know from the few times I've forgotten to take it, (I have an alarm set), that sudden withdrawal even over 24 hours = nightmare (not really - can't sleep = waking nightmare.) Presumably a slower withdrawal is more manageable and less traumatic, (but still sounds it). However I started taking it because of the RLS, if I remove it then after the withdrawal phase It seems I would return to where I was before starting it i.e. sleepless.
SO, something to replace it. Opioids!!! Ok in the short term possibly no problem. Longer term - isn't this out of the frying pan into the fire. At the moment I am prescribed codeine phosphate (stronger than over the counter) for sciatic pain that was preventing me from standing or walking for more than about 30 seconds. It barely worked. If I was already on opioids it probably wouldn't work at all. That's the thing, the amount you need for the same effect and their pain killing potential diminishes and you need more and more. I have had some experience with post surgical patients who are already used to opioids, the normal dose of morphine or whatever doesn't touch their pain. Not to mention the respiratory depression, chronic constipation etc. It seems to me that coming off Pramipexole because of it's potential to cause compulsive behaviour could lead to opioid addiction.
It appears to convince me that you have to present a stronger case for using opioids not just a case for coming off DAs
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