I decided to ween myself off of Mirapex because of ED issues...I’m a dude btw...and was totally blindsided by DAWS. My sleep specialist and my GP were ignorant of what was going on. I had been on .5mg of Mirapex for less than 6 months but getting off has been horrible. I started by halving my dose down to .25. Now I am at .125mg. I plan to hold here for another four or five days then go without. I have been taking gabapentin to help and have added GABA...and amino acid of some kind...magnesium chelate and an iron supplement. All due to posts I have read on this website. No opiates.
I guess I should get to my question...before Mirapex I only suffered from rls in my legs at night or occasionally at the theatre or on a long flight. Now I can feel the effects at any time during the day and also in my arms and chest. I believe this is from augmentation as a result of taking Mirapex. Is this permanent? Will these issues in my arms and chest subside once I am off of Mirapex completely?
My GP was very apologetic when I showed her some literature regarding DAWS, augmentation etc...she has referred me to a specialist at Swedish hospital in Seattle. This is a couple hundred miles from my home but worth the effort if I can get some relief.
Thanks for any input you can provide.
Bjamn
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BJamn
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Yes the effects of Augmentation do go away but it can take months.
Gabapentin won’t help at all during withdrawal but will take effect about 14 days after last dose of Mirapex.
It took me about a year to find the right combination and dose of meds after withdrawal from Ropinirole (Requip) but I found opioids to be helpful during withdrawal.
I’m now on Pregabalin and OxyContin and get about 80-90% relief.
Be patient- it may take some time to find the right dose and time of meds or you could be lucky and find the Gabapentin works very well and very quickly.
Augmentation will disappear snd you should revert to how you were before taking dopamine agonists.
Thank you so much for answering me so quickly. I am relieved to hear you say that I should revert back to my pre-mirapex rls. For example I just got up from a nap where I didn't sleep because my legs were jamming the whole time.
I take it Pregabalin is not a Dopamine Argonast? I am trying to educate myself before I see my new neurologist.
The dopamine agonists are Mirapex( Pramipexole) and Ropinirole ( requip and adartrel) and the Neupro patch( rotigotine).
Pregabalin is a similar drug to Gabapentin ( both anti- seizure meds) but pregabalin has fewer side effects for most people. It’s more expensive than Gabapentin which is why most GPs prefer Gabapentin.
Read everything you can on the main RLS UK website - a lot of meds like anti histamines and anti depressants make RLS worse and getting your serum ferritin above 100 will improve RLS.
Knowledge is most definitely power and as most GPs are not very up to speed you need to be one step ahead.
Well done for educating yourself and for taking action. Much kudos for that and fair dues to your doctor for apologising - that is truly rare.
If the worsened symptoms are due to augmentation they will almost certain clear up after withdrawal but as Jools suggests it can take time. Unfortunately, lack of sleep can exacerbate rls (in a cruel irony) so it is important to re-establish sleep as soon as possible after the dopamine agonist has washed out of your system (about 10 - 14 days after the last pill). It is at this stage that an opioid can be particularly helpful as it enables your body to get some rest in spite of symptoms (up to this point the opioid will only be masking the exacerbated symptoms caused by the withdrawal process) and this can kick start the recovery process. If you don't want to take an opioid (or can't get one prescribed), you could also look at kratom, which is generally effective against rls, for a short time.
In your case, although you haven't been on the d/a all that long, you were started on a relatively high dose so that may account for the rapidly worsening symptoms. I hate to be the bearer of bad news but it is highly doubtful that any of the supplements/medicines you are taking will help at all during the withdrawal process though it is certainly worth getting your iron levels up (raising serum ferritin to over 100 can help to resolve rls in some people with relatively mild symptoms) and starting gabapentin may mean that it will kick in just as the mirapexin is washed out of your system.
Rather than reducing directly from 0.125 to nothing, I would be inclined to take half the tablet for a few days also.
Very good luck with this. We are all with you. You will not regret getting off that high dose of mirapexin.
Thank you for your response. I have been breaking my .5mg pills in half...and then breaking the halfs in half to get to .125. Maybe I should get a prescription for .125 and try to halve those.
Don't worry about DAWS until you are off DAs altogether. It probably will not happen.
Right now your brain is screaming for dopamine agonists, and punishing you for not delivering enough.
The A2DLs will not help, but a strong opioid will. Do you have a doctor sympathetic to that, or will the opioid frenzy stop you from getting what you need?
Thank you so much for taking the time to respond. I am confused by “A2DLs” I am pretty new to all this and I don’t know what that is. My sleep doc has indicated a slight resistance to prescribing opioids but I could likely get them if necessary. I see her next week. Maybe I could use them when I do the final cut off of Mirapex.
Sorry BJamn, I should have said Alpha 2 Delta Ligands, which includes pregabalin and gabapentin. They can cause quite severe depression, so care is needed.
They may be the solution for you for the future, but will not help with withdrawal from dopamine agonists.
For opioid advice, I suggest you go to rlshelp.org - this is the home of the Southern California RLS Support Group. On the home page, you will find hundreds of patients' letters, which are answered by Doctor Marc Buchfuhrer, who is one of the great advocates for opioids for RLS patients. If your doctor is worried about opiates - as she should be, generally - then the advice of an expert might be reassuring.
Also, print out the following paper and take it to your doctor - it is the best and latest advice on opioids from the finest minds in the field.
Perhaps your aim should be to get off dopamine agonists, possibly with the temporary use of strong opioids such as methadone or oxycodone, check that your ferritin levels are optimal, then see if you can come off all meds.
Everyone's advice above is what has helped me to just start the process of withdrawing from Ropinirole - just 3 days in to what will be a deliberately slow process. As augmentation had set in again, I am already using codeine but keeping it as low as I can by cutting up the tablets into minute quantities so I can do small steps at a time. But I also have Tramadol on standby for when things are likely to get really bad.
I admire you for having got as far as you have without any help, but have heard so many people say that the last bit is the hardest. Sleep deprivation is bad enough in 'normal' times but what you and others describe sounds truly awful. But I'm determined to get through it and get off the DAs for good and I hope you keep strong and keep going - You'll do it and I will take courage from you!!!
Good luck on your journey. How are you proceeding on your deliberately slow process? I started by halving my dose but that may have been too much as things went off the rails for several days until I acclimated.
I've been on 1.5mg Ropinirole. I intend reducing by 0.25mg a week - so it will take six weeks plus the post withdrawal stage of finally getting rid of it out of my system. I have no idea if that is too slow, but it seems to make sense to me and for me. Others have reduced by 0.5mg per week - that just seems quite drastic. I may just be prolonging the agony and if I seem to settle after a few days on a reduced dose of 1.25mg. If things don;t go too pear-shaped I may try weaning off another 0.25 on, say, the sixth or fifth days. But it is very early days as this will only be my fourth night and the symptoms are much more obvious and already disturbing sleep more despite the codeine.
I hope you manage your your final reduction and manage to withdraw totally - do let us know how it all goes on for you.
Like the others, I am pretty certain your symptoms will disappear and go back to pre DA levels when the last traces of the DAs are out of your symptoms. I have withdrawn twice - once from Ropinirole and once from the Neupro patch - what a relief when it was over.
I have gone off pramipexole two times in the last 7 years. Both times I had DAWS ( wasn’t aware of the syndrome the first time.). When it happened again there was more information available so I was able to recognize the symptoms (after I was in the middle of the withdrawal.). What I experienced was extreme, profound depression. It kind of snuck up on me and it lasted months. The first time it happened my marriage of 36 years ended after a few months of the extreme depression. The second time I was in a fairly new relationship which also ended. I was unable to maintain a relationship when in the extreme depressive state.
I’m hoping that since you weren’t on the DA for long that you will not suffer this depression but just be very aware of your emotional state. It sneaks up on you. My RLS was awful both times after going off the DA but I was able to stay strong and not go back on it after the second time going through the depression and some pretty awful RLS (though I almost did).
Currently I am taking oxycodone each evening and sometimes at around 2:00 a.m. I’m taking magnesium and I use lidocaine on my legs when symptoms flare. I also have some marijuana creams. The thc one I put on the bottom of my feet. The cbd I run onto legs though I think the lidocaine works just as well.
Sorry to go on and on. Just wanted to warn you about DAWS. (By the way, I live north of Seattle. Am going to an RLS support group meeting this Saturday in Anacortes. The first time I went I felt such a sense of relief walking into a room full of people who understood me).
I am so sorry to hear about your broken relationships. That is a terrible price to pay. One of the things that tipped me off to DAWS in the first place was the hair-trigger depression that would come on all,of a sudden. One minute I was fine then something unexpected would happen and I would be ticked off and depressed for the rest of the day. I think the GABA 500mg twice a day is helping...or maybe just pchycosematic. I work as a music director for teenagers so having a quick temper is very problematic. Fortunately, my mood generally improves when I am around the kids.
I am in the TriCities. Have you an rls specialist in Seattle?
Actually my depression was so bad that I couldn’t muster up the energy to make the effort to go to Seattle. I have dug out of the deep and profound depression and my RLS has been much better so I don’t feel the need to go to Seattle for treatment. But I know it’s an option.
You can get Pramipexole in 0.088mg tablets, if I were you I’d try & get some of these, & then cut them in half. You say you’re taking .125mg at the moment which equates to 1 ,1/2 , .088mg tabs.
Cut the whole one in half, you then have three halves,1/2 tablet to take three times a day.
Take this amount for a week , then cut 1/2 a tablet out each week , over the next three weeks. You may need to take other medication to help with the withdrawal, there’s plenty of advice on the forum.
This is very good information as I see my sleep doc next week. It is amazing that such a small amount of this drug can have such a profound effect. Also it is troubling that my sleep doc gave no indication that weening off may be troublesome. I like you idea of getting the .088 tabs.
Pleased you found my information alittle helpful!! I’ve never known another medication (Pramipexole), for causing such withdrawal problems, just taper off slowly & carefully, & if it takes longer than you hoped, just go with it.
Some Drs don’t have much experience of withdrawal with dopamine antagonist medication.
You could speak with your local Pharmacist, they quite often know more than Drs, when reducing medications.
Also read people’s advice on this forum there are many with lots of experience.
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