gabapentin and mirapex not working

[netadmin67]

Middle-aged guy with RLS.
I've gotten to the point where 2 mirapex and 5 gabas / day aren't working. Really, I can't tolerate the 5 gabas. Too many side effects. At this point, there don't seem to be options and I'm considering just having to stay on my feet or sitting up in a straight chair until maybe the last couple of hours of my day. Maybe a career change will be necessary (I sit at my desk for my job).

My current neurologist/sleep specialist is a Cleveland Clinic doctor and is the second one I've had during the course of my treatment. RLS has been a plague or me for about twenty years but is much worse in the last few years. Been tested for iron, etc. Rest of the blood work seems normal. They always say that, don't they?

Sorry, just feeling particularly depressed and out of options.

Have to go check the natural remedies and lifestyle changes forum.

[Rustsmith]

You didn't say what size your mirapex pills are, but I have a suspicion that you are augmenting. The combination of a large dose of both mirapex and gabapentin that does not manage your RLS is rather telling. FYI, the FDA max dose of Mirapex is 0.5mg/day and if you have been taking that amount for some time and your symptoms are getting worse, augmentation is quite probable. Unfortunately, dopamine agonist augmentation is a side effect that is specific to RLS so only a doctor who is an RLS specialist is likely to know about it and how to treat it.

Some doctors seem to think that adding gabapentin will address augmentation, quite simply, it won't. The only way to treat augmentation is either to get off of them or to switch to an opioid (which most doctors who are not familiar with augmentation will refuse to do).

To learn more about augmentation, read through our forum on that topic and read through the Mayo document that the link in my signature points to. If you think that one of your doctors might be willing to learn, you might share the Mayo publication as well as this somewhat older Mayo publication about the proper use of opioids to treat RLS. https://www.mayoclinicproceedings.org/a ... X/fulltext

[netadmin67]

Thank you for your response.

I'm currently on 3 x .125mg daily. Which is a pretty low dose (as I understand it).

My neurologist and I did discuss tramadol but he brought up the usual concerns about opioids, etc.

[Rustsmith]

I would say that 3x.125 is a high moderate dose for RLS. The smallest pill is 0.125 and the usual dose is 0.25mg. The FDA max dose for RLS is 0.5mg, which would be 4x.125. Part of the problem is that the max dose for Parkinsons is 4.5mg/day and often, this is the max that doctors see if they check their reference books or computer pages.

As for tramadol, it is a weak opioid that does not carry the regulatory restrictions that most of the others have (30 day prescriptions and no refills). But there are two special situations with tramadol. The first is that it is also an anti-depressant that has a chemical structure that is very similar to Effexor. Years ago, a tramadol manufacturer tried to get FDA approval for use as an anti-depressant, but the FDA refused. Their refusal wasn't because the clinical results said it didn't work, it was because they didn't want psychiatrists prescribing an opioid to treat depression. The second issue with tramadol is that although rare, it is the only non-dopamine med that can cause augmentation.

It is for that reason that some of the RLS experts have recently begun prescribing buprenorphine for patients who have been augmented. This med can be prescribed in a form that also includes nalaxone, the med that is used to treat opioid overdoses. When prescribed in this form, it is a Sch 3 med as opposed to Sch 2 for the other non-tramadol opioids. Sch 3 drugs can be prescribed for longer than 30 days with refills, which makes it more convenient for both the doctor and patient than Sch 2 drugs.

[netadmin67]

Thank you for all of this.

[badnights]

Some doctors seem to think that adding gabapentin will address augmentation, quite simply, it won't. The only way to treat augmentation is either to get off of them or to switch to an opioid

I think what Steve meant to say here is that the only way to treat augmentation is to get off the Mirapex and switch to an opioid, either while tapering down from the Mirapex or afterward.

3 x .125 is low for Parkinson's but too high for WED/RLS. Since 2012, some specialists in WED/RLS have been recommending no more than 0.125 daily. I didn't realize that the FDA has finally recommended a different, lower maximum for WED/RLS than Parkinsons, as per Steve's post, which is good. But the new recommended maximum according to the new AASM guidelines published last January is 0 mg (that document is in my signature link, along with a slightly older Mayo Clinic one that also recommends not using dopaminergic meds for WED/RLS). We'll see how long it takes the FDA to catch up to that.

Although it's true that augmentation is more likely and happens faster on higher doses, it is also true that augmentation can happen on low doses, and augmentation can happen within days of beginning the medication. I augmented within days on a very low dose of ropinirole (a related medication).

Gabapentin can really mess with your mood, especially if you don't take it at exactly the same time every day. Once you're up at a really high dose, it might make more sense to take pregabalin (Lyrica) or gabapentin encarbil (Horizant) instead, because the effect is a lot more predictable.

That said, meds in that class (anti-convulsants) don't help with much of anything once your WED/RLS has been augmented by pramipexole (Mirapex) or one of the other dopaminergic meds.

[netadmin67]

@badnights - Thank you for that. I am being switched to pregabalin this week and continue to wean off of the mirapex.

My life has really been turned upside down with all of this and I hope to get back on track again soon.

[netadmin67]

Also, my current neurologist and sleep specialist is very reluctant to look at any kind of opioid. He is the second neurologist I have seen who won't go down that path. So it seems to be unavailable to me.

[badnights]

Also, my current neurologist and sleep specialist is very reluctant to look at any kind of opioid. He is the second neurologist I have seen who won't go down that path. So it seems to be unavailable to me.

All I can say is don't give up. Opioids are the only effective medication for most people who have had their disease augmented by dopamine agonists like Mirapex. Doctors prescribed the medication that worsened the disease, they should not be reluctant to prescribe the medication that is now the only effective one because of the augmentation. Search, and search again, for a doctor who will learn with you, search with patience and respect but also the knowledge that there is a safe and effective treatment out there that you ought to be able to access.

In my signature link is a paper from 2018, for physicians, on how to prescribe opioids for refractory WED/RLS. If you have access to a printer, it would be good to print it, read it yourself, and highlight some key phrases. I'll give you my suggestions in this version of the document

2018 Silber+ _Consensus Use of Opioids in RLS annot for physician.pdf

(250.86 KiB) Downloaded 49 times

, but a non-highlighted version is available in my signature link for you to mark up as you see fit.

Some suggestions for how to present this to a physician can be found here: viewtopic.php?p=111523#p111523

Don't give up on your life! You can do this. I wish you the best luck ever.

[DontLikeRLS]

All I can say is don't give up. Opioids are the only effective medication for most people who have had their disease augmented by dopamine agonists like Mirapex. Doctors prescribed the medication that worsened the disease, they should not be reluctant to prescribe the medication that is now the only effective one because of the augmentation. Search, and search again, for a doctor who will learn with you, search with patience and respect but also the knowledge that there is a safe and effective treatment out there that you ought to be able to access.

I agree. I think the lack of RLS knowledge of these doctors and specialists is absolutely appalling. I would expect neurologists to be close to state of the art, but they are not.

As far as "patience and respect" I took a more aggressive approach. Many of us are literally fighting for our lives. How many posts have I read, where RLS sufferers were desperate and thinking (or at least had thought) of ending it. We have to be aggressive in pursuing effective treatment. We cannot afford to waste time with doctors who refuse to prescribe opioids. My doctor is an arrogant jerk, refuses to be educated, and is opposed to the use of opioids for RLS treatment. I aggressively challenged him (my voice was raised), and had the research with me to support my position. The way I look at it, if he won't prescribe, I'm done with him. There is no risk in me pushing things. He prescribed me both medications I requested, although he didn't approve of any of it. My wife was with me for that appointment. I suggested to her that my doctor was impressed with my knowledge. She informed me he was not; he was simply annoyed with me. Well let him be annoyed. Basically, many of us serve as our own doctors, and just use doctors to prescribe. Their RLS knowledge is limited, and they really have no expertise to provide us. Regardless of what my wife observed, I do think being well educated is critical when meeting with any doctor. I am way past the point of simply putting myself in a doctor's hands for my RLS treatment.

I recently had a "meet and greet" with another doctor. He was new to Canada, and looking for patients. I quickly explained my RLS situation, and asked if he would prescribe opioids. He was vaguely familiar with the use of opioids for RLS treatment, and said he would prescribe, but would not agree to continuing dosage increases. So I have two doctors that will prescribe. A barrier we face in Canada, is the shortage of doctors. Some people do not have a family doctor, and some have turned to nurse practitioners (which works fine). So the shortage of doctors may be an issue in obtaining an opioid prescription. If possible, use your network. Does anyone in your circle know of a doctor who is accepting new patients? I found my meet and greet through my wife. Her previous doctor was my current doctor. She left him because he is an arrogant jerk. She found an excellent doctor at a different clinic in another town. This clinic has a new doctor looking for patients. I'm 73, and hope to live another 10 years or so. I have no intention of needlessly suffering due to ignorant doctors. I'm not going to waste months or years waiting for effective treatment that is readily available. I have an appointment at a movement disorder clinic on April 16, 2026. That's insane. Even there, I won't just swallow what the neurologist suggests. Not when I hear of these people prescribing Carbidopa/Levodopa for long term RLS treatment. My respect for some of these doctors is limited, and rightfully so. I believe in strongly advocating for myself.

[badnights]

Wonderful, Don. It's vital to stick up for ourselves!

The reason I recommend to approach physicians with patience and respect is partly because a physician who is aggravated at my "attitude" will not be as receptive to actually hearing what I say; and also, it's to avoid antagonizing a person we might need.

I'm not good with words in situations of conflict - I would much rather write what I want to say than try to say if off the cuff. I wish I could raise my voice and demand my rights like you. I just got a new doctor because my wonderful one left town, and I have to somehow communicate to her that my life is unraveling again I will try to remember your story as I do.

[DontLikeRLS]

Thanks Beth. Respect is generally the best approach, and one should never be disrespectful when being treated well. I'm almost always respectful, but am prepared to fight (never physically) if necessary. I think the key word here is "hearing" what you say. My doctor does not hear what I say about RLS, because he's not listening. My wife left him for that reason, and urges me to leave him. So why do I stay with him? He has been a good doctor on non-RLS issues, but that's not the reason. I could easily ditch him, but where does that leave his next RLS patient? We all know doctors are poorly educated regarding RLS. This guy needs educating, but refuses to learn. Hopefully, my current regimen remains effective, and I can demonstrate to him the effectiveness and low risk of low dose opioids in the treatment of RLS. As long as he prescribes, I see no need to leave him (my wife totally disagrees, and is frustrated with me). My doctor will learn from his patient.

It would be great if we were all blessed with doctors who listen to us. Those who are not, should not hesitate to raise their voice. There's really not much to lose. From some of the posts I've read here, there are too many doctors that are neither listening nor learning.

[badnights]

I could easily ditch him, but where does that leave his next RLS patient? We all know doctors are poorly educated regarding RLS. This guy needs educating, but refuses to learn. Hopefully, my current regimen remains effective, and I can demonstrate to him the effectiveness and low risk of low dose opioids in the treatment of RLS.

Bravo!

[ViewsAskew]

Thanks Beth. Respect is generally the best approach, and one should never be disrespectful when being treated well. I'm almost always respectful, but am prepared to fight (never physically) if necessary. I think the key word here is "hearing" what you say. My doctor does not hear what I say about RLS, because he's not listening. My wife left him for that reason, and urges me to leave him. So why do I stay with him? He has been a good doctor on non-RLS issues, but that's not the reason. I could easily ditch him, but where does that leave his next RLS patient? We all know doctors are poorly educated regarding RLS. This guy needs educating, but refuses to learn. Hopefully, my current regimen remains effective, and I can demonstrate to him the effectiveness and low risk of low dose opioids in the treatment of RLS. As long as he prescribes, I see no need to leave him (my wife totally disagrees, and is frustrated with me). My doctor will learn from his patient.

It would be great if we were all blessed with doctors who listen to us. Those who are not, should not hesitate to raise their voice. There's really not much to lose. From some of the posts I've read here, there are too many doctors that are neither listening nor learning.

Excellent points. And, you are correct - so many doctors are not listening. I have only had a handful out of many tens that did.

[netadmin67]

UPDATE: for what it's worth - My doctor is willing to start me on pregabalin. So we are trying that while I wean off of mirapex and gabapentin.

Fingers crossed. And I appreciate the thoughts and encouragement. Best to all of you.