For cutting down my use of pramipexole,, I'm not sure what route to follow - cannabis, gabapentin & tramadol, methadone etc., etc. but I now know that I have to do something to get off it, yet there are so many things to consider.
I first got to EARLS by searching for info. on Iron, since my GP had just sent me for blood tests to determine my ferritin levels. I knew there was something I had seen by Dr. Earley from Johns Hopkins about some difficulties with its absorption in the brain, and how the tests needed to be done and interpreted, but I was having difficulty telling her about it. In any case, I think the test was irrelevant, in that I had unwittingly gone in to have it in the afternoon after eating, and also, they were just the basic blood tests.
But, as has been the case regularly since then, I transitioned to other posts about other aspects of RLS and happened upon one saying "Pramipexole is the key...". As I read the comments, I began reeling in horror and dismay, as I realized the severity of my situation. The comment "Are you sure this is not a typo?" by Joolsg in relation a the dosage of 1 mg. (when I, at that point, was taking 1.5 mg.!) and then further along, that it was worse than getting off crystal meth made quite an impression! While I am now down to 1 mg. (following Sue Johnson's advice to go down by .125 mg. for 2 weeks at each step) I realize that probably, the worst is yet to come. As I contemplate taking the next step down to .75 mg. today, I'm seeking advice as to whether I should do it anyway, or wait until I feel more comfortably stabilized at 1 mg.? I don’t want to fail this time, as I have in several previous attempts which were less well structured and well thought out.
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RestlessC
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My advice has always been to let your body decide the rate. It usually takes a few weeks for the body to accept the new dose.
It took me 18 months to get off Fentanyl ( an extremely powerful opioid) ,at the very end I used Clonidine and Valium to help the cold turkey step. About 10 days
You can do this, and it will be worth while.
The alternative is just to continue Prami at ever increasing rates and continually worsening RLS.
Yes, very good advice! I had already opted for .75 mg. the night before last, which did indeed come back to haunt me last evening, so stepped back to .875 mg. of pramipexole plus a tramadol before bed. Too late for last night, but will stay there for awhile longer - as you say "until my body decides". Thanks!
Definitely wait until you are stabilized and go down to .875 as your next step. As you get close to the end you may temporarily need a low dose opioid. Also gabapentin should be your next step. If that fails, then you can consider the others. And I would go back to your doctor and ask for a full panel iron test. If you are taking iron tablets stop taking them 48 hours before the test .It is definitely worth it as increasing your ferritin to 100 nor more if yours is less helps 60% of patients. Here is my standard advice which you have probably already seen: Beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin 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 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't at
Yes. I am indeed now back to .875 mg. of pramipexole after going down to .75 the day before yesterday and having a very bad time yesterday. Am hoping I can continue long enough to get to the gabapentin phase. Hadn’t fully remembered that it was only for taking so close to the end. So, there’s a long way to go before being able to get to that point. In the meantime, I guess the only assistance as I progress downward with the pramipexole might be a bit of tramadol from time to time?
As for the iron, was wondering about the value of requesting that again at this point since my results on the first (albeit imperfect) test, were 162, so am thinking it’s probably not part of my augmentation problem?
Interestingly, it was my GP who referred me to the Mayo Clinic’s updated algorithm, which I then proceeded to read in its entirety, although not completely comprehending. Will get back to it again. I don’t think my GP has every had another patient with RLS, however she does seem willing to accompany me on the journey. It was a sleep doctor early on who first prescribed such a high dose. She just took over the prescription from him, and I guess, based on his “expertise” carried on with it.
That is great that you have a doctor that referred you to the Mayo Clinic article and is willing to learn. So many aren't. Yes, it can't hurt to request a full iron panel test again if only to be reassured it is over 100. Don't take any iron tablets within 48 hours of the test.
May I ask how you reduce these tiny tiny tablets? I’m reducing .125 tablets by cutting them in fourths but it’s hard to do because they r so small and break into tiny pieces.
Exactly! I'm now dealing with .5 mg. tablets! Cutting them in 2 to .25 is one thing, but last night was reduced to trying to get them into quarters to try and get an additional .125 mg. Pretty imprecise by the time I'd finished. Am not due for another renewal until July. Thought I'd go to the pharmacy today and see if I can get some .25s. Not sure if they'll do that or not.
Dopamine Agonists (DA) Ropinorole/ pramipexole are very hard too come off with the exacerbating of symptoms.
Sorry to say the hardest it yet to come when your down to that final dose. I think most on here can relate. But don’t give up! Is Life better without DA? (Only until you find what works for you). But I know being on DA only prolongs the suffering.
To help with the withdrawal, if it does take its toll, then use an opioid to help. Tramadol is pretty good at at making things less worse then they need to be. 50mg -100mg at night. I would try not and increase it and also try only use it only those really bad nights. If every night is a bad night then needs must.
Given your age, I would advise a low dose opioid moving forward once your off the pramipexole. I know most on here advise pregabalin / gabapentin. I worry todays safe alternative pregablin / gabapentin are tomorrows DA’s. That’s just my opinion. Not fact.
Most on here have had success with tramadol / buprenorphine.
Good luck. You will need it! Nevertheless we all rooting for you. You can do this!
Thanks. Have been out of the picture for a few days with a power outage due to a terrible storm that passed through the area. Nonetheless I was able to carry on @ .875 mg. of Pramipexole per day, which I divided into small, regularly scheduled amounts. As long as I was able to remember to get each portion into me before things start to go bad, it’s been pretty much O.K. with a bit of Tramadol sometimes added in to the last portion of the day before bed. But, it’s not encouraging to hear that the worst will be when I get to the very end, so I want to be prepared with something else, so I can try to avoid it (and if not, successfully deal with it). I don't want to get all the way to the end, and then ultimately fail. I find the “pain”, discomfort, or whatever you want to call it, practically unbearable, even when it just breaks through and bothers me here and there, for the course of an evening or in bed during the night. I can’t even imagine enduring it for much longer, even as I hear people talking about it lasting continuously for days, weeks, months or even years! I had initially thought that one was supposed to tune in with gabapentin and tramadol earlier in the game (like now) and use it as a crutch until I got down to 0 mg. pramipexole, at which point I'd be free! But if that's not the case, and I'm just transitioning my dependence from one drug to another at the end, then I too am not sure that's the best route for me. However for now I guess, one step at a time and in the meantime, I think I'll start by investigating cannabis - preferably not smoking, but smoking if necessary, and also perhaps low dose opioids... I'd better go and do a lot more reading and rereading. Am having difficulty keeping straight all these different drugs (many of which have multiple names) and remembering which categories each belongs in. First I've heard of buprenorphine, though I guess it's morphine or some sort of opioid. Thanks for your encouragement. Next step - .75 mg. but not quite yet!
Was rereading your reply above, and now that I’m down to 0.625 mg. (Taking 2 & 1/2 .25 mg. Tablets per day) I’m going to go as slowly as possible, so I don’t end up failing in the end. But your comments about Gabapentin are what I’m wondering about now.
You had the thought (as I did) that it could be the next thing we all have to get off, or maybe Tramadol or whatever opioid as well! If one goes slowly enough, is there still no way to avoid that awful period of a week or two at the end? And be able to exist quite happily thereafter taking nothing? Or, is one always going to need some sort of crutch, and it’s just a matter of choosing one’s poison - cannabis, low dose opioid, and/or gabapentin(or some other drug from that grouping).
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