I have had restless leg syndrome for about 35 years. I have been on pramipexole for about 25 years. I have been in the augmentation stage for about 10 years, but fortunately still get decent sleep, just symptoms start earlier and dizzy and sedated most of the day. My question is.... has anyone come off pramipexole taking 2 days off one week, then 3 days off the next week instead of stopping all at once? I'm currently on .25 at night.
Coming off pramipexole : I have had... - Restless Legs Syn...
Coming off pramipexole
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Sleepylamb
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I would imagine you would be better to go down slowly and by very small doses.
I agree going down to low doses, but the experts at that point say quit and the next few days no sleep, etc... Could it be easier to decrease every week taking a day off then next week 2 days off?
No - not a good idea. You would suffer extreme withdrawal symptoms the days you were off it and then you would be back on it again and then withdrawal again etc. You wouldn't be reducing it at all just whip sawing back and forth.
I wondered if it would help. Thank you for letting me know. I was wondering if each day you are off would it decrease the severity more slowly.
No each day you are off it would be the same.
This is the best way to come off it:
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut if needed.
To come off pramipexole), reduce by half of a .125 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). 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 (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to divide the doses on pregabalin)
Most of the side effects 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 (200 to 300 mg of pregabalin)."
If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).
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 or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them
Thank you Sue!! You are sooo helpful.
Sue, I’m taking D3 , sublingual B , Flora complete, SciatiEase. Then I just received an order delivered I ordered a while ago …Restlex(was hoping that will help with RLS … haven’t started it yet) . I’m also taking Magnesium Bis-Glycinate and Magnesium Carbonate like you suggested 3 hours before Gabapentin. Also Feramax in the morning with food. Wow… sounds like a lot. Should I drop any? Thanks
No!!! You must take the iron at night on an empty stomach about two hours before bed. It should greatly reduce your symptoms of RLS in about 1.5 hours for one night. So must be repeated every night. No one told you about this. There are dozens of us on here getting relief this way. It is nothing short of miraculous. If you are on HRT or SSRIS or calcium channel blockers the iron won’t work as well. Much luck YoghurtLover .
Here are two examples
Just realized you’re drawing down on the short term use of a DA. The iron will definitely help and in the long run so will the magnesium and gabapentin. I think you will have a much easier time than most. Still, has anyone suggested you get a low dose opiate (50 to 100mg) of either codeine or tramadol? Two weeks worth will probably do you. You might not even need it, but it would be nice to have it there anyways.
Thanks you so much Clamire ....good advice! I have a phone appointment with my GP next week and will ask her. Also thank you for giving me hope that getting off Pramipexole won't be too terrible! This whole augmentation thing scares the heeby geebies out of me :).
I’m willing to wager that with the iron magnesium and codeine in your corner you won’t have a single sleepless night. Please keep me posted.
Sue is right about the Fermax. Ferrous bisglycinate is the way to go. Please don’t even think about an infusion until you see whether the iron provides a decent amount of immediate relief.
Thanks Clamire 🥰
I will get the ferrous bisglycinate . I'm interested why you advise against infusion (I suppose I was hoping for a quick fix 😜)
The iron at night is a quick fix. 1.5 hours. Body ferritin levels have little to nothing to do with RLS unless you’re anemic. RLS has everything to do with something called “serum iron” which plummets at night (along with dopamine) and we get RLS. You are being told your ferritin is too low (I disagree) and that raising it will help symptoms. If ferritin is a major component in RLS then you should have symptoms 24/7, not just at night. As a matter of fact, if the iron at night does work for you and then you get an infusion the iron at night will likely no longer work for you because your body will shut down its entry from your GI track because it will sense iron overload. Then as the months go by and your “overload” condition lessens, the iron at night should work again. See below:
violetta254 profile imagevioletta254
1 month ago
I don't know where the studies are that say that iron supplementation is effective only if the iron levels are low. Iron bisgylcinate has been a life saver for me and many others on this site even though my iron levels are NOT low. I can often get through the night with no RLS since I started it. And the information about addiction to opioids when using it for RLS has been debunked.
Violetta had an infusion and it did not help. The iron at night trick is a lifesaver for her
Wow… so much to learn … thanks 🙏
Also...is it OK to take ferrous bisglycinate at the same time as Gabapentin ?
I believe so. With that said, I would try to separate them by an hour on either side.
Hey, I just read your RLS starts early evening. Wanna have some fun? As soon as it starts take the iron with some vitamin c (if you have it, if not forget it). After 1.5 hours you should notice your RLS is dissipating.
This is worth posting again. Tap and read:
healthunlocked.com/rlsuk/po...
And three years later it is still working for her:
healthunlocked.com/rlsuk/po...
Oh wow… I read the links … amazing. Definitely going to try iron early evening then with vit c … sounds like a really good plan … I’ll keep you posted 🙏💕
Yoghurt, if you try the Feramax first and then the bisglycinate, it will add to our body of knowledge. As you can see, we know for sure the bisglycinate works. Feramax is a question mark. If it works for you it will be less of a question mark.
Ok, go, relax, meditate on the exciting journey that lies ahead.
The feramax might be causing a bit of constipation though 🤷♂️
Just checking in on you? Hope you’re doing great!!!
Thank you so much for checking in Clamire … very sweet of you . I like what you say … relax and meditate 🧘… such an important part of the journey!
There is so much to figure out. I used to take magnesium calm just before bedtime . Now I have to take it 3 hours before or after Gabapentin. Atm I’m taking Pramipexole (I’m busy coming off … atm down to 0.125) 2 hours before bedtime and Gabapentin when I go to bed as I’m cautious about getting dizzy before getting to bed .
I’m on 200 Gabapentin atm . Will increase to 300 on Friday and decrease Pramipexole to 3/4 of 0.125
I’ve been taking Restlex in afternoon , which has iron in as well and something is causing me a lot of bloating (and unpleasant farting!!!) So I’m trying to figure that out.
I think I’ll drop the Restlex and just take the iron Bis-Glycinate late afternoon and see how that goes .
How important is all the vitamins B’s and do you have any suggestions for products ?
I’ll appreciate something that has all the necessary vit B’s in . It’s kind of difficult to keep up with so many bottles of meds.
I’m a full time caregiver for my Altzheimers hubby so sometimes my attention is all over the place!
Thanks for listening 🙏
Interesting. How are you sleeping? That’s the big question. Btw, for the iron at night trick to work it has to be taken about two hours before bed.
Here’s a schedule that should help to insure full absorption of all medication and a convergence of usefulness at bedtime when you need them all to be working.
6pm-magnes 8pm-Prami 9:30pm-iron 11:00-Gabapentin. 11:15-asleep
Put this on your fridge
Prami is absorbed very quick. Actually so is ferrous bisglycinate. These time should be fine. You should feel good and relaxed at bedtime and sleep well.
Hard to say what is causing the bloat. I tried a drug called Mybetriq. Not for overactive bladder but for interstitial cystitis. Ridiculous gas! Ridiculous I tell you!!!
Restlex is very expensive and only gets 3.9 stars on Amazon. I demand a minimum of 4.5 before I’ll buy something.
Thanks Clamire … great advice to put it on the fridge! 👍
Thanks for the schedule! 🙏That works perfectly for me . This forum is so amazing with lovely helpers like you! 🙏💕
Btw, congrats on getting so low with the Prami. Remember to bug the doc that prescribed the Prami for Codeine, just in case you need it. You may not. Stick to that schedule (sans the DA one day) and you might do just fine.
Thanks Clamire … and thanks for the good idea to put schedule on the fridge .. it’s done! 🤪And also … I set alarms to help 👍
Oh … I forgot to tell you … in my phone appointment with the doc who prescribed Pramipexole she mentioned that if Gabapentin doesn’t work there are other options …. and she mentioned another DA . I just said nothing . She is really very nice and helpful but oh my …. the doctors don’t have a clue what DA’s do to us. She congratulated me that I’m doing this (I told her about HealthConnect)
Apologies HealthUnlocked 🤪
Apologies … HealthUnlocked 🤪
I’m going to send Restlex back … thanks for advice 🙏
What other vit B’s would you recommend?
It’s a whole science of which I’ve learned bits and pieces. For instance, I know you don’t want folic acid, you want methyl folate. You want the niacin that causes flushing. B12 in the form of methylcobalamin. B6 is p5p something.
I have no recommendations for a single source supplement. Sorry 😪
I took 1/4 of 0.125 less Pramipexole last night (was on one and a half before but already dropped the other half over 3 weeks)
With the 0.125 Pramipexole, iron bisclycinate and 200 gram Gabapentin I slept really well. I Followed the evening schedule you suggested.
Last night with the 1/4 of 0.125 gram Pramipexole and 300 gram Gabapentin I didn’t sleep well… had RLS at 4am. I’m also dizzy this morning.
I don’t want to take codein as it makes me nauseous.
I suppose I’ll just have to wait it out and let my body adjust 🤷♂️
How was your sleep prior to that schedule? Were you sleeping well without that addition of iron at 9:30?
I think the iron at 9:30 helps as I was taking less Pramipexole and I slept well. But with the going down to only 3/4 of .125 Pramipexole last night I didn’t sleep well. I suppose my body needs to adjust 🤷♂️I’m taking 300mg Gabapentin since last night
Oh …. I just had a thought … prior to taking the iron at 9:30 if my RLS bothered it was when I go to bed … couldn’t fall asleep. Last night I fell asleep right away when I went to bed at 11:15 about, woke just before 2am … went to bathroom and fell asleep again … no RLS …. And woke up at 4am with RLS . Could not sleep again
Yep, that’s how it works. 6 to 8 hours of relief. If you want to go out on a limb you can try some potassium at 4am. Since I’m taking a PPI I get breakthrough RLS. I take an electrolyte powder in 9oz of water. The powder is called Ultima and I assume it’s the potassium in the powder that helps. But it only contains about 6% of the recommended daily allowance for potassium. I keep thinking I’m going to order a potassium supplement to see if it truly is just the potassium. You should also try laying on your stomach at 4am and imagine yourself walking on a tightrope and fighting not to fall off. Our brains release dopamine when they sense imbalance. That’s why we get relief when we stand and walk. Sounds strange I know.
Wow wow wow… I’ll try the tight rope thing tonight! I’ll look into potassium for sure ! Thanks 🙏
AND I just checked … I have at least 6 … possibly 7 … out of the top 8 symptoms of low potassium . I’ll have to look at supplement too I think. I’m wondering about potatoes 🥔
We would scoff at people who got relief from a banana before bed. But if your RLS is mild that banana might get you over the hump. I believe potassium is a natural DA without that drag on your receptors. Potassium (in high enough doses) is well known in the scientific community to cause a pop of dopamine release. That’s all I want. A little pop of dopamine. I pretty much assume that as time goes by we will need to up that potassium dose.
You definitely don’t want to be low on potassium. But I prefer to be judicious with my use of it at night to achieve that “pop” of dopamine. I ordered some potassium citrate off Amazon. One capsule is = to 2% of the RDA. That’s crazy low but it’s ok. I’ll open up two to three capsules one bad night and add to my Ultima powder to bring it up to closer to 12% of the RDA.
Seems as if supplements contain very low %potassium RDA. Food seems to have more . Dried apricots, orange juice, raisins, potatoe, spinach , salmon, watermelon (when in season) all foods I can concentrate on for now. Please let me know if you find a supplement that gives higher RDA . I will do so too … Will keep looking 😉
This might help. You can add as much as you want to a drink.
Potassium powder supplement
Thanks
Try eating the food with highest potassium at 4am if you awaken and can’t get back to bed. A banana or its twin sister kiwi might be a good option.
I’m going to try eat a potato every night and see how it goes … I see it’s the good with highest potassium and absorption is within a few hours
Why are you taking feramax? If it is for RLS that is way more elemental iron than you need at 150 and a lot of it will be wasted.as less is absorbed above 75 mg. And if you are paying for it, it is expensive.
Have you had your ferritin checked? If so what is it? If not do so following the directions I gave you before. I'll be glad to give you them again if you want.
If your ferritin is below 100 or you want to bring it up to as much as 300, Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night.. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
If your ferritin is below 50, take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate.
Clamine's suggestion is to try taking 56 mg of ferrous bisglycinate on an empty stomach before bed. For a few people this stops their RLS completely for one night only. If it doesn't stop it completely then take it every other night.
Restlex contains magnesium so if you end up taking gabapentin be sure to take it 3 hours apart.
There is some overlap in what you are taking. For example both Restlex contains magnesium, iron, vitamin B complex and vitamin C and SciatiEase contains Vitamin B complex but that is not a problem.
Sue, Thank you so much for all this info. I'm feeling I'm on a very steep learning curve here! And also...feel like I should start paying a consultation fee! You advise is very valuable to me .
My doctor prescribed Ferrous Gluconate 300mg every second day, but after months on it my ferritin is 36. I asked the pharmacist whetter there is any other iron supplement that might be better absorbed and she suggested Feramax. I have a phone appointment with my GP next week and want to ask her about an infusion. Is this something you would recommend? I've heard that monoferric infusion is good.
I have a problem with constipation so I should probably stop taking the Feramax .
Yes ask for an iron infusion and monoferric is a good one.
Hi Sue, are you saying the HRT patch makes RLS symptoms worse?
Unfortunately yes.
Just a quick question .. can I take Pramipexole and Gabapentin at the same time ?
You can but it will be a waste as it won't help until you are off pramipexole for several weeks and your symptoms have settled.
I’m starting weaning off Pramipexole and my dr prescribed to start with 100 Gabapentin and increase weekly with 100 till I’m at 300… so I want to be at 300 when I’m off Pramipexole. Does that make sense? Also… I don’t get when I should be taking Iron as it’s suggested here (not by you) that I should take it 2 hours before bedtime , that is the time I have to take Gabapentin… and I’m not supposed to take Iron close to other meds? What do you suggest?
Sue, on a pramipexole reduction plan. Am suffering powerful surges down the leg. It’s a bit like getting an electrical shock. Lasts about 2/3 seconds, is very painful and seems to have affected muscles around the hip/ groin to the extent it feels like torn muscles. I just limp around now. Should I be expecting this reaction? I’m down to 3.5 tablets from 5.
Thanks
Withdrawal symptoms can vary all over the map. I suggest you slow your reduction down and if you are still having them now even go up a dose to stop them. You can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($10 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. Go as slow as you need to avoid the symptoms.
Wouldn’t it need to go down to .00001gm? .01gm= 10mg
I’m sorry I think that should say .0001 gm.
Actually a .125 mg pramipexole tablet weighs .125 grams so a .01 gram scale works.
That works if you are just going by weight and not how much medication you are actually getting. The weight is not equivalent to active medication as it doesn’t account for binders/fillers or an equal distribution of active medication to filler.
True. But that is what is recommended and accounts for all that.
Thay’s I teresting . Where is that recommended?
RLS-UK under Useful Resources - DA withdrawal Schedule rls-uk.org/_files/ugd/b0a19...
It is also what my doctor did for me in the US.
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