Hi all - I’m new (posting) here. Thanks for being a community, I’ve read so many posts and found comfort from all of you!! Quick background - I have suffered with RLS at least 20 years - but probably my whole life. Started pramipexole .25 in 2000 and in 2018 was taking 2.75mg due to general lack of knowledge on my part and def my doc’s....not much knowledge about it in my area it seems. I’ve spent all of these years doing drug holidays etc always to end up back where I was and sometimes worse with adding a sleep aid etc. I experience RLS during the day as well, and also in my arms.
I’ve had communication with a doc in California who suggested that my withdrawal from pramipexole will remain significant due to high dose I’m on. I’ve spent that last year trying to change that part - so here I sit taking roughly .75mg for probably the last 3 months I am certainly not sleeping well but do get some. I am unable to survive past the 4th day of trying to withdraw completely because the augmentation is so bad. I’ve been taking pregablin for a few months 150mg 2x day but am getting off of that due to some bizarre mood swings and massive uncomfortable swelling with hands and feet. Additionally, these are meds I have tried over the last years without much luck —-Pramioexole (obviously) ropinipole(?), tramadol, mirtazapine, temazepam, naltrexone, gabapentin, pregablin, always have had Xanax as backup but never tried it by itself fir control. —- I’ve done all the things with iron, sugar, caffeine etc.
So - I started calling local methadone clinics (based on conv with doc in California again) to see if anybody would work with me mostly to be talked down to and “educated” about how what I was asking was wrong and just going to cause more problems. Fast forward, I have an appointment in a few weeks with a clinic who works with opiate withdrawal folks with Suboxone. There’s my question - I’ve read and seen more information about methadone than Suboxone...anybody here had success getting off of pramipexole with Suboxone? After you are off of it - then what do you do? I’ve seen where some people maintain a low dose on the methadone side but is that realistic?
Many thanks for all of you before and now.
erin
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erinjee
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I really feel for you. Getting off dopamine agonists was the hardest thing I have ever done. I was so tempted to give up as the total lack of sleep and constant body twitches every 10 seconds was hellish.
I managed to do it with the help of tramadol and cannabis.
Have a look at posts by Shumbah.
She used Buprenorphine to get off pramipexole with great success so it does seem to help. She lives in Australia but traveled to New York to see Dr Glen Brooks at the Ketamine Clinic in New York.
She takes a small daily dose of Buprenorphine sub lingually and it has been totally successful for her.
This is fantastic to hear, I’ll look her up. Thank you so much for the reply!!!
Hi, sorry to hear you're struggling to get off pramipexole, it does seem very hard.
Just to point out that any worsening of symptoms you get when reducing the dose is a withdrawal effect, NOT augmentation. I note you are suffering augmentation anyway, but that should lessen as you reduce the dose.
The withdrawal effects should be temporary and should get less after a couple of weeks. I see many people who find it difficult to withdraw from pramipexole because of these withdrawal effects, but if you don't stick at reducing, then you'll be stuck with pramipexole dependency.
In order to reduce the withdrawal effects it's better to wean off pramipexole very slowly i.e. by reducing it in small steps, over relatively longer periods of time.
At one point, I was taking 0.75 mg pramipexole. I weaned off it by reducing it in steps of half a 0.125mg tablet every 4 weeks. You could try that. If withdrawal effects are very severe, you could try reducing in steps of quarter a 0.125mg tablet.
If withdrawal effects lessen before 4 weeks on any dose, you could cut the dose more quickly.
I appreciate you want to get off pramipexole quickly and get over the augmentation, but it really helps to reduce slowly. I took 10 months.
As Jools says, Shumbah found buprenorphine excellent and it should help with withdrawal effects.
Shumbah now takes buprenorphine regularly, so if you do need a replacement for the pramipexole, which you probably will, then buprenorphine should be appropriate.
The other things you could consider is if you have any deficiencies, especially iron, if you have any food allergies and finding out and avoiding aggravating factors ..
One such factor is mirtazepine, known to make RLS worse.
Thanks for the information - seriously. It’s amazing how much more real information is here than what I’ve been able to extract from the doctors over the last decade. I’ll work on the smaller incremental doses in weaning off again. The last time I hit the .5, I was unable to remain at that dose for longer than 6 days I think. I would sleep in fits but never rest and it kicked up in my arms times 20. I’m a therapist (mental health/sub abuse) and the movement it stirred up was too distracting for me and for clients..the lack of sleep wasn’t helpful for that either 😊. Everything is telemed right now with COVID so I’m hoping for a little bit more room to do this.
Yes on the mirtazapine- realized that’s very quickly. Here’s another question for anyone who might know: has anybody experienced ongoing issues with depression after pulling off any of the dopamine agonists?
Sleeplessness is one of the main withdrawal effects from dopamine agonists.
I hope this makes sense but it's not the dose of the DA that causes withdrawal effects, it's the reduction. If your expertise is substance abuse I imagine you've seen this.
If you reduce from 0.75 to 0.5 it's a big drop for pramipexole and you will get withdrawals.
Reducing by 0.0625 (half a 0.125) or thereabouts depending on how sharp a knife you use and how good your eyesight is, is less of a reduction so less withdrawals.
Unfortunately with DAs there is a tendency for it to take longer to reduce as the dose gets lower.
Some people suffer from DAWS when weaning off pramipexole (or any DA).
DAWS is Dopamine Agonist Withdrawal Syndrome. However, it's not usual for someone to get this unless they developed an Impulse Control Disorder (ICD) as a result of taking the DA. This can take the form of compulsive gambling, compulsive shopping, compulsive eating or hypersexuality.
It is possible that somebody who hasn't an ICD may get a milder form of DAWS. DAWS itself can be very severe and includes mental health issues including agitation, depression and suicidal ideation. In "normal" withdrawal, this should fade along with the RLS symptoms and insomnia.
It does make sense and as odd as it sounds it took me way too long to realize that I was fighting withdrawal like many of my clients because didn’t automatically connect something like pram being as hard on a body as an opiate etc...sad on my part. Once that clicked-I felt slightly less crazy.
I will work on smallest doses possible and a slow down here at what is hopefully the tail end of a a rough journey with this drug.
You are obviously massively knowledgeable on all this - is that just from your own experiences with RLS?
Partly my experience, but being retired I have time to look up evidence.
I also have some quite broad background knowledge. Ex health professional/lecturer, Started my career as a psychology graduate then went into mental health nursing and moved on from there. 4 decades ago.
I’ve never experienced depression in my life until I was going through augmentation and withdrawal. It lasted about 5 months- think it was mainly PTSD after a very traumatic withdrawal. Looking back I think I withdrew from Ropinirole too quickly.
As Manerva has advised, when withdrawing from DAs- the slower the better. Take your time and then organise 2 weeks holiday for when you drop the last dose as the lack of sleep and agitation may still be difficult.
Hopefully, if you have been prescribed Buprenorphine, you won’t have withdrawal symptoms.
Hi I have had RLS for years I was on pramapectal and I was told to come off them done as possible then I went back to my doctor's then he asked me if I would like to go to a neurologist she checked me all over then she told me to go on pregabalin 75 mg I at 6 pm and 1 at 9 pm the best thing ever happened for me all the best Tonyhenshaw241241
I hadn’t heard anything about 6pm and 9pm that’s interesting. Did she explain what that did? Is it just getting into your system more d sad specifically at night? I’m glad it’s working for you!! I am in the process of pulling off that as well - over the 4 months of being on I’ve noticed some not so fun mood swings plus crazy swelling in hands and feet that never evened out.
I wonder (look forward to) a day that something works properly and docs quit trying to layer more meds on top of each other?!?!
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any successful stories switching from opioid to pregabalin? 
Success Story (so far, anyway)
Has anyone successfully weaned off DA meds and feeling ok
A great success by approaching things from the other direction!
PARTIAL SUCCESS WITH RTMS
