Hi, All. I was going to write about this year's months-long Hell due to discontinuance of pramipexole virtually cold-turkey, following more than two decades of daily use. Having found that circumstance recently has been described by others, I think it may be more helpful if I instead comment on the collateral damage which I encountered as a result of the discontinuance of pramipexole: its impact on the potential benefit of other drugs commonly prescribed to treat RLS. In this instance: pregabalin; and tramadol.
Both I and my "sleep expert" neurologist incorrectly had inferred that the substantially increased discomfort and pain that I experienced--and the rendering of tramadol as useless--were due to the administration of pregabalin rather than to the discontinuance of pramipexole. Apparently, neither he nor I had heard of DAWS: Dopamine Agonist Withdrawal Syndrome.
Several days ago, I had my first meeting with a general practice physician at an area hospital that is part of the Mayo Clinic Health Care Network. The physician suggested that we give pregabalin another go, starting with an initial dose of 1 x 50 mg each evening. Having been on this regimen for the past several days, I am pleased to report that I am sleeping better notwithstanding the continuing RLS discomfort and experiencing less daytime RLS discomfort.
I was surprised to read that an ironic side-effect of tramadol is that its discontinuance leads to RLS (not talking about primary RLS; rather, even if you don't have RLS, discontinuance of tramadol or any narcotic may induce RLS). As an added benefit, my research suggests that pregabalin is among the drugs recommended for use during tramadol detox.
Various post have voiced disappointment with pregabalin (and other medicines) during their contemporaneous reduction in dopamine agonists. If my experience is relevant, it may be worthwhile to revisit some of the more benign medicines that were believed to be ineffective.
You may know all this but thought I would mention it in case you don't. It will take 3 weeks before it is fully effective. After that increase it by 25 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. Most of the side effects of pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin daily." If you take magnesium don't take it within 3 hours as it may interfere with the absorption.
Thank you so much SueJohnson. ...and Wow! Coincidentally, I had discussed various aspects of what you mentioned with my doctor ...including the Mayo Clinic Updated Algorithm with which she (a "Family Medicine" doctor at a hospital that is part of the Mayo Network) is familiar.
When we discussed when I might first experience relief, I was surprised that she said that she suspected I would be one of those who experienced an almost immediate reaction. Placebo-effect aside, such has been my experience my entire life. I am extremely sensitive and react almost immediately to medicines, allergens, etc.
Though I suggested that her familiarity with the Updated Algorithm might make referral elsewhere superfluous, she nonetheless referred me to a different "sleep expert" neurologist whom I won't be able to meet for a couple of months.
As for the dose: because of age, the doctor felt that the starting dose (only 50 mg) should be lower than otherwise might be the case--even lower than the initial dose prescribed by my "sleep expert" neurologist. Our next meeting is scheduled about ten days from now, at which point we will discuss how well I tolerated the 50 mg dose and whether and by how much to increase the dose. I anticipate the dose will be upped.
Hi, again, SueJohnson. Having revisited your comments in light of my experience these past two evenings, I am in a quandary. While I was aware that, in general, it took a while for pregabalin to "build up" before its effects are felt, the two times that I had been prescribed pregabalin (once during DAWS; second time some days ago), I noted the same results: initial relief, then less so, or indeed worsening. Not sure why, but the positive jolt that I enjoyed just days ago now seems to have vanished. Good news of sorts is that I still have some tramadol left and am using to get me through till my next doctor's meeting in about 10 days.
Hi, again, SueJohnson. Yes, much of RLS is strange. So many variables--at least in my case: weather; dampness; and humidity among them. I wanted to limit variables to eliminate, e.g., titrating off tramadol concurrent with addition of pregabalin. Therefore, I am maintaining the reduced tramadol dose (1 x 25 mg three times/day v. Rx for 2 x 50 mg AM and 2 x 50 mg pm). Just how much of the discomfort is due to the tramadol "detox" v. pregabalin is not yet clear. Be well.
Hi, WideBody, and thanks for your reply. Yes, I infer that it destroyed the lives of many. So great was my discomfort that, at one point, I thought of rewriting my will to dedicate my entire estate to funding litigation against the "sleep expert" neurologists who prescribed dopamine agonists and other poisons for RLS.
But its not just one doctor nor even a bunch of bad apples. Little doubt that my lawsuit would fail as the fellow travelers in the medical profession all would testify that the "sleep expert" neurologist acted in accord with generally accepted medical standards.
Tempted to include here a further comment on my discussion with one "world-famous" RLS expert with whom I spoke, and how he abruptly hung up the telephone call that he had initiated when I dared to explain how I was able to endure almost an entire hour inside an MRI without any apparent discomfort. Because my explanation didn't fit into his "algorithm," he wouldn't even entertain the possibility that my observations were correct.
Tramadol and pramipexole both cause augmentation. You cannot quit either one cold turkey. Both are aggressively addictive. Pregabalin is useless until you have had a short holiday. Both are causing more misery than they relieve. I havent done tramadol but have been on 10mg of methadone for 6 years. I missed my dose and thebwithdrawsl was instant and nasty. I did 2mg mirapex (same as prami) for 11 years. Max dose is 0.5mg. I reduced my dose by 0.25 mg (1/2 pill, too much). I was unbearably miserable for 4 days. Needed 3 weeks to get over that and dare another reduction. Took me a hard year to wean. I recommend cutting 0.125mg (1/4 0.5mg tablet). You may want to continue the prami and tramadol and plan a careful wean.
Good morning, Greenleaf360. Thank you for your reply. I refused to begin methadone despite my "sleep expert'" near-insistence that I commence same. In addition to addiction and stigma, I refused to sign a "Pain Management Plan" (that I may comment about separately in greater detail). And I suspected that my reaction would be much the same as with hydrocodone (itching, constipation, etc). As for tramadol and pregabalin:
Under the Rx of a "sleep expert" neurologist, I previously was prescribed pregabalin, and began an initial dose of 75 mg daily. When I expressed concern about disruption of my sleep/wake cycle, exacerbation of RLS, rendering of tramadol (and hydrocodone) ineffective, the "expert" told me to increase my dose of pregabalin. It was increased to 150 mg daily, then to 300 mg daily. I balked at the suggestion that the dose be further increased to 600 mg daily. Fortunately, I was able to discontinue pregabalin "cold turkey" with no ill effects. In time, I attributed much of my contemporaneous torment to pramipexole discontinuance-induced DAWS rather than to pregabalin. Was I correct in my attribution?
As the term "addiction" generally is defined, I was not addicted to pregabalin nor to pramipexole. I had the will power to stop any time I chose. And though I clearly was "dependent" upon pramipexole, I do not think that I was or am dependent on pregabalin--at least not as I type this comment. That leaves tramadol.
Again, my willpower is such that I am confident that I am not "addicted" to tramadol. I can stop any time I wish, much the same was I was able to stop smoking cigarettes cold turkey even after decades of smoking a pack and one-half a day (often unfiltered Pall Mall---my favorite). But I concede once more that, after more than 20 years of daily doses of tramadol @ 2 x 50 mg each morning and 2 x 50 mg each evening I am dependent on tramadol. My experience thus far as have titrated down to currently 1 x 25 mg tramadol three times daily is that the "withdrawal" is, for me a least, nowhere as horrific as with pramipexole. Lord willing, today I hope to titrate down to 1 x 25 mg tramadol twice daily.
Not sure what to do with the current prescription for pregabalin. Less that one week ago, my new doctor prescribed a starting dose of 50 mg each evening, and I have been taking since. The available literature suggests that it take a while to "kick in," and that the side effects and potential for addiction are less than for opiods. The experts said the same thing about pramipexole. I will discuss further with my doctor when I next see her in about ten days. Meanwhile, given my ordeal in getting another doctor to attend to my RLS, I feel compelled not to abandon her Rx for pregabalin lest she cease treating me altogether.
Thank your for your reply, SueJohnson, Just now, I yet again researched the "side effects" of the two Rx medicines that I am taking (tramadol; and pregabalin). For 20+ years, I have found that the tramadol worked consistently, with little/no side effects. This is kind of/sort of confirmed by the literature.
However (and I'm not sure if you have such things where you reside), no one will renew my Rx for tramadol unless I sign a "voluntary" Pain Management Plan in which I "voluntarily agree" to be treated like a heroin addict. I refused; ergo, I am titrating the remaining supply. Big No, No: I am titrating tramadol at the same time that my current doctor just wrote a new Rx for me for pregabalin!
My admittedly layman's research suggested that, while pregabalin might not be addictive, its side-effects, both long and short term, were many and varied, and potentially more destructive than tramadol So what am I to do?
Ideally, I would not modify one dose while commencing a new Rx as it would confound the effort to assess the impact of either the reduction of tramadol or the increase in pregabalin. But what am I to do? If I don't titrate tramadol while I still have some remaining, I will have nothing left till I see the neurologist two months henceforth. And if I do titrate the tramadol, I have no way of knowing if the addition of pregabalin rather than the reduction in tramadol has been the source of the recent and substantial aggravation of RLS.
The side effects for some are such that they can't stand them and need to wean off the medicine. Some often find that the side effects they experience on pregabalin that bother them, do not bother them on gabapentin which is basically the same except it needs to be taken in divided doses 2 hours apart of 600 mg as it is not well absorbed above that. Others such as myself find the side effects to be mild and do not bother them, or disappear after a few weeks. However, you took 300 mg in the past and if the side effects you had then were not bad, it won't be any different this time. They don't increase with the time you are on them. You will have increased RLS as you wean yourself off tramadol and the 50 mg of pregabalin won't control your RLS since it is such a low amount. However I would start the pregabalin since it normally, although possibly not in your case takes 3 weeks to be fully effective. At lest with DAs it is not fully effective for several weeks after they are discontinued, but I don't know about tramadol.
Hi, SueJohnson, and good morning/afternoon/evening.
I'm about to call it a night, but I did want to get back to you as soon as I could in light of your comment regarding potential for pregabalin addiction.
I was surprised to find that some states, including Virginia, categorize pregabalin different than do other states and the United States Federal government. My understanding is that Virginia determined that there is "some evidence" that pregabalin is addictive. Even if not treated as addictive under Federal law, within the State of Virginia there appear to be some reporting and other requirements associated with pregabalin based upon its potential--however slight--for addiction.
How far we've come! When I was a boy, I worked in a "drug store" (chemist/pharmacy). Codeine was sold over the counter (customer signed a book). While cleaning out the drawers one day, I found a License to Dispense Marijuana dated in the 1930s. My how times have changed.
Do you live in Virginia? I do and have no problem getting pregabalin. And it is extremely rare to be addicted and it is usually in people with current or past substance use disorders. And if worried, gabapentin which is basically the same has even less likelihood of one becoming addicted.
Hi, SueJohnson. Yes, I too reside in Virginia. It is my understanding that, though neither the Federal Government nor the Commonwealth of Virginia require a "Pain Management Plan" for pregabalin, gabapentin, and related Rx medications, Virginia and a few other states nonetheless require that prescriptions for same be reported whenever dispensed, and that their use be monitored.
Here are some links that may provide additional insights if you would like to further research:
1. Article: Virginia is among those states that categorize gabapentin [and per below, pregabalin and similar medicines] as subject to State monitoring and reporting: pharmacytoday.org/article/s...
3. Virginia reporting and monitoring requirements for all prescriptions for Schedule V medicines. dhp.virginia.gov/Practition...
Note that, in some respects, these regulations may treat pregabalin even more restrictively than opiods despite the absence of a requirement for a PMP. No quanity is specified; rather, an Rx for "any" amount of pregabalin triggers the regulations.
As to whether or not pregabalin potentially is "addictive" or has a "withdrawal syndrome" similar to opiods, see, e.g., pubmed.ncbi.nlm.nih.gov/289..., suggesting that pregabalin may be more "addictive" than gabapentin.
I guess my doctor does this without my knowing it. And yes one does need to withdraw from them slowly. If it is done slowly enough there are no withdrawal symptoms. Unfortunately many doctors don't know this and have had their patients go cold turkey.
We had a surgery in Brisbane that asked all existing and new patients complete and sign a form staying we would not ask for sleeping pills or opioids as the surgery would no longer prescribe them.
They soon changed there policy when people voted with there feet as we did.
We also have what is called a private script in Australia which a doctors can prescribed without government awareness of course at a slightly higher cost.
Out of interest I have been blessed to find 2 mg Buprenorphine I can chop and change dose. Sometimes when I am travelling and changed time zones I have gone well past 36 hours before I’m in new time zone and recommence my medication I’ve had zero withdrawal. Dr Glen said I would not suffer withdrawals another doctor said out of your system in 48 hours. I have enjoyed freedom from RLS for over 3 years now.
I wish we knew the best way to bring awareness of Willis Ekbom disease to the world stage.
Thank you Shumbah for your reply. I am pleased that you found that Buprenorphine was helpful. If memory serves, that is categorized in the US as an opiod for which a Pain Management Plan would be required. On principle, I will not agree to same.
Over the years--and I say this mindful of the fact that I have primary RLS--my RLS discomfort has been idiosyncratic. It worsens with some weather (dankness, dampness, "front" coming") and eases slightly other times. Even my former "sleep expert" neurologist noted that some folks had experienced seasonal variations.
Even without the requirement of a PMP, my goal is to identify just one non-opiod medication that I can take for RLS. With respect to the three Rx medicines that I was taking just a bit over 12 months ago, I have ceased altogether pramipexole and hydrocodone, and am titrating off tramadol (now down from 200 mg per day to 50 mg per day). With the exception of newly re-prescribed pregabalin, that's it!
And you know what? Without minimizing my present RLS discomfort, my present discomfort is no worse than it was 13 months ago, and sometimes much less!
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