Hi all, this is my first post on this site..I have been on pramipexole for approx. 10 years at 0.5mg each night approx. 2 hours before bed ..I have started getting some augmentation and want to switch over to gabapentin, I would really appreciate someone who has been there and done this who would be open to share their advice and knowledge. Obviously i would like to complete the transition with the least amount of discomfort as possible.
I am currently taking an iron supplement to elevate my iron levels before I make the switch to gabapentin. My general health otherwise is pretty good. I am a 60 year old male and i am reasonable active for the best part.
I would appreciate any valuable input as I'm a little unsure how to approach and implement the switch comfortably.
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Welcome to the forum. You will find lots of help, support and understanding here.
To come off pramipexole, reduce by half of a .088 mg tablet (.125 if you are in the US) 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. Dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) 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 split the doses with pregabalin) Most of the side effects of gabapentin or 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. 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). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further. 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, 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.
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. Keep a food diary to see if any food make your RLS worse
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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender
Hi Sue , thanks so much for your detailed advice. I have a copy of the RLS algorithm and have started to read through it carefully .. I am a 60 year old male and i live in Brisbane / Queensland / Australia.. I have a couple of questions sue that hopefully you can help me out with please.. I understand the tapering process that you have explained .125mg every 2 weeks . Q? As I decrease the pram can I slowly introduce the Gabapentin at a low lose of say 100mg as a cross over ? so as I decrease the pram I increase the gabapentin so when i have almost come off the prami I will almost be at a good dose of gabapentin.
My doctor has indicated that i start the Gab at a dose of 100mg per day , 2 hours before bed. However,she has indicated i should be totally off the prami before i start on the Gab, this sounds like harsh way of switching the medication.
To answer your question about introducing gabapentin as a crossover please see the paragraph below which is in the middle of Sue’s comprehensive response.
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.
Some people will increase the gabapentin to 900 mg before coming off the pramipexole. I certainly wouldn't go any higher than that until your symptoms settle after coming off the pramipexole as you may not need any more than that.
Hi again Sue , just found a copy of my last blood test results, and my ferritin level was 73 .
and my iron saturation level is 16Both Below your recommendation. Can i ask my Gp for an iron infusion as you have suggested? and will they comply with this do you think? What would plan B be if i can't get an iron infusion please?
Hello and welcome, I recently weaned off Pramipexole the same dose as you. Maybe I was a tad faster however only a few weeks now since my last dose and I have NO afternoon augmentation anymore! I also don't feel evening RLS now. It's so wonderful to sit and read a book, or comfortably watch tv before bed. But ...I unfortunately had negative side effects from Pregabalin, it seemed to exacerbate my bedtime fidgeting to almost aggravated hypersensitivity. I was realizing this since increasing the dose as per my doctor. Last night I just didn't take the Pregabalin at all. I took the prescribed Trazadone only and slept for 7.4 hours quite comfortably. My Fitbit sleep score was pretty good; almost enough deep sleep and REM sleep. This info may not help you however the successful part of my journey may encourage you! Best of luck. Keep us informed.
Gee i feel like a nuisance regarding all this , i don't feel that i will be covered for an iron infusion given some of the material that i have been reading up on , either via Medicare ( Australia ) or private health insurance, is there some other way i can increase my levels rather quickly as i don't want to try and switch meds in the mist of low iron levels also
You aren't a nuisance. That's what this forum is for. You should be covered for an iron infusion with that low transferrin saturation percentage since it is below the normal range. However if you can't get it, 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. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every day at the same time so it is at least 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours, 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. Ferrous sulfate for most people does not cause constipation but iron bisglycinate is much less likely to. 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 tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
I'm in Australia and have had approx 5 iron infusions. I don't recall them being prohibitively expensive. Maybe $100, and some possibly bulk billed. If it works, you save that in not having to buy regular prescription meds.
Dear Sure, I'm so grateful for your post. It's three am as I'm writing, having woken from my rls symptoms again. I've been on pramipexole for about five years and recently began augmentation. The doctors in UK seem so far behind in their knowledge of pramipexole symptoms. I'm finding it hard even to write this due to brain fog. I'm a sixty six year old male, and have been a meditator for over three decades. I consider myself to be grounded and a stable person, yet recently I have been desperate, almost suicidal and feel that I can't convey how ghastly this syndrome is affecting me to my GP. There's an unreality about the whole process that is so difficult to describe or relay to someone who hasn't experienced it. I've been using many OTC supplements in a desperate attempt to assist after coming across an 'Absolute cure for rls' website and it has helped a little. I'm off carbs, most sugar and salt. My diet is repetitive but I don't care if it helps. I've weened myself off 3 x 0.088 mg of pramipexole and am now only on 0.088 per day. I've convinced my GP to put me on Gabapentin which I began taking two weeks ago, starting on 100mg,which I have raised to 200mg. I still get the symptoms but they fluctuate. Sometimes they're not as bad, and sometimes they're excruciating. The brain fog and anxiety are the worst part. I'm someone who hates taking drugs and feel my whole system is in meltdown, being changed, rewired. I'm desperate. I've recently retired from being a support worker in a rehab centre and here I am on Gabapentin and reading about people taking opioids to come off Gabapentin. The idea of being utterly free of rls is somehow an impossible dream. Life ahead seems to be a continuation of this present nightmare. The idea of being on other powerful frogs to alleviate the rls and, be done with it completely, seems so frightening. I don't wish to be an addict and yet I am. Well, like so many here, I could go on but I just want to be free of this ghastly condition. I'd appreciate any advice even though you have already given so much. I guess it's the moral comfort I'm also seeking from someone who understands. Thanks in advance. Nofel Nawras
The brain fog and anxiety should should go away in a few weeks after you are finally off pramipexole and your symptoms have settled. Don't worry about people taking opioids to come off Gabapentin. They were probably on a lot higher doses and they don't have RLS. And you would take a drug to help any other medical condition. RLS is no different.
And don't give up. Many people have been able to get their RLS under control. There is hope. It's just a matter of finding what it takes in your individual case.
Thank you Sue. The last couple of nights have been ghastly, maybe an hour's sleep and I'm wondering what to do next. The panic that comes over when I can't sleep is ridiculous but all too real.
I'm concerned that the Horizant (am now taking 300mg at night) is somehow giving me even worse symptoms than the pramipexole, so much so that I've gone back to taking more pramipexole to try and get some relief. This did stop the tremors eventually for a while but they came back and sleep is impossible.
My question is do the symptoms get worse when taking horizant to begin with?
SueJohnson has given you excellent advice.Most people join the site when Pramipexole and Ropinirole worsen their RLS.
Most of us have been through augmentation and withdrawal.
Follow Sue's advice and you will be in a much better place.
Read DicCarlson's post and Ruggabear's.
Both warn about these awful drugs.
It's best to get off them when you're fit and able as withdrawal is brutal for the vast majority. But stick with it, as when you're off Pramipexole, your RLS will be less severe and intense.
Hi Joolsg, I've been off Pramipexole for 12 days now, and off Pregabalin for 5 days (I had loads of aggravating side effects). So I'm trying to follow Dr. Christopher Earley's practice that someone posted a link to, which suggests to washout for 12 days completely clean of any serotonin influencing meds. This was agonizing, so I bought CBD/THC oil 2 days ago. I got about 5 hours of fractured sleep, only 26 minutes of deep sleep. But as the cbd oil wears off I get bad RLS in my whole leg and one arm now. Watching the clock until morning, playing meditation music on repeat.... any advice on next steps? I dont take any other medications, iron bisglycinate at bed, all vitamins before noon. I follow all the good tips on here. When will I start to feel relief?
The Pramipexole withdrawal lasts weeks but as you've ALSO stopped pregabalin, you'll be experiencing pregabalin withdrawal as well.I didn't follow Dr Earley as I couldn't handle a drug free 12-14 days.
However, 5 hours fractured sleep is exactly what you can expect at this stage.
In another week, you can start medication.
There aren't many people with severe RLS who can control RLS without medication. Iron infusions can help.
Morning everyone, I apparently cannot handle an overall washing out period from 2 drugs. By 2 am I hadnt slept yet, I desperately took a 1/2 pill of Tramadol. Then slept good quality for the next 4.8 hours. I made it to 6 days now since stopping Pregabalin ( and 14 days since last of Prami) but I needed a break from this insomniac distress. The CBD oil just isnt enough to abate the RLS movements. As you say Joolsg, maybe within another week or 2 I'll be settled down and have a new baseline of what my RLS is without DAs.
I don't blame you for taking tramadol. Withdrawal can break the strongest person!Side effects of pregabalin are dizziness, nausea, unsteadiness, mental fatigue, water retention. They definitely settle after around 2 months.
You will probably need to start meds for RLS if raising serum ferritin above 200 doesn't improve your RLS.
If pregabalin was intolerable, your options are Horizant or gabapentin, the same class of drugs as pregabalin but with different absorption and elimination properties and possibly different side effects.
Alternatively, low dose opioids can be prescribed for Refractory RLS.
You've done brilliantly to get this far, so congratulations.
Like others here, I appreciate this forum and the supportive people. I'm willing to try a Gabapentin or Horizant product next; I'm reading that Horizant is actually developed for RLS and other things, but very expensive. I'm alright with a mild opioid if necessary however the doctor will likely want to try Gabapentin first.
I have done pretty much the same journey - came off Prami and now take 100mg of Gabapentin. My RLS is sooo much more manageable now, and I tend to think that Prami contributed to making my RLS worse over time. Once I started to augment then I will say it might get worse before it gets better but it’s a worthwhile journey. You haven’t mentioned Magnesium- I take magnesium glycinate every evening about 5-6pm and changed my diet to drop things like tomatoes, cheese and MSG but can still tuck into a lasagne if not too late.
I had to take some codeine based tablets as I came off Prami as it was pretty bumpy, not that much, but a couple of tablets at bedtime helped a little. It probably was 2 or 3 months after stopping Prami that I really felt it was out of my system, but I felt better after just a month.
I started Gabapentin after I was clear of Prami- I tried pregabline but that made me feel a bit away with the fairies, so swapped to Gabapentin after a month.
I now sometimes sleep through the night - or if RLS disturbs me I can usually manage it through fairly quickly, so for me a massive improvement and I feel a little more in control without prami in my life.
Best of luck with your journey - funny enough we are visiting in Australia as I write this down at Coolangata which doesn't sound so far from where you are!
PS I actually managed the 26 hours of flying from the UK without much more than a bit of stretching, kept the food simple and no alcohol - I am not sure I could have some this a couple of years ago, so extremely happy
Thats awsome , thanks so much for your valuable advise , and yes Coolangatta is about 1.5 hours drive south from brisbane down towards the gold coast , great spot
Like you I was on a low dose of Pram for about 10 years before sensing that this medication was losing its effectiveness. After consulting on this site and elsewhere I got my GP to agree to my switching to Gabapentin about 4 months ago. I achieved the transition easily enough and without withdrawal symptoms over a week by merely reducing my Pram intake, cutting the pills in half eventually before stopping altogether. My iron levels were OK (131ng/ml), so no worries there. I always acceepted that my RLS was nothing like as severe as others I read about on this site, so my experience was perhaps to that extent untypical.
But here's the punchline - around the same time, and solely because I occasionally suffered from leg cramps at night, a friend suggested I start on Magnesium. The impact has been immediate - not only do I have no more leg cramps but my RLS has disappeared. I been off Gabapentin for about 3 months with no return of my RLS. I now regard Magnesium as essential to keep me in good health (I'm 81) and so far, touch wood, no RLS.
Thanks for your post. I have tried Magnesium as a cream on my calves but not relief of RLS. How do you take the magnesium ie in what form and how much please?
I buy magnesium capsules from Bettervits and take two in the morning (I guess that time is arbitrary and others might choose different timings). I think the max daily dose is around 300mg, and I think it is dangerous to take too much daily.
As I said, I started on M having read of its efficacy in reducing leg cramps and periodic leg movement disorder(which it has); it had not occurred to me that it might deal with RLS also. In fact from my reading it seems that M plays a major role in many pathways and systems in the human body. The capsules I take include several forms of M and also Zinc which apparently helps the body to take up the Magnesium. I hope this is helpful.
What a cool new name! I'm taking that iron bisglycinate at a higher dose every 2nd or 3rd night. Last night was no, tonight yes. I seem to be an anomaly where I dont yet notice if it helps my sleep. I suspect now that I'm off Pramipexole, and the aggravating Pregabalin, that I can more clearly determine if gentle iron helps me drift off to happy land. 😊
Pramipexole can be a very difficult to eliminate from your system. Some people have compared it to getting free from heroin or cocaine. If you are in the US as I suspect from your dosage of 0.5 mg you can try to use the actual pills themselves. I would decrease by 0.125 mg every five weeks. If you have any side effects at all during that period things are only going to get worse unless you micro taper. The way to micro taper is to take the pills to a compounding pharmacist and have them turn it into a liquid. If you need help with the math, let me know. Whatever you do, don't let your physician treat the withdrawal symptoms with an opiate or methadone. As far as using gabapentin is concerned, the best drug available now for treating RLS is called Horizant. If your healthcare insurance does not cover it, the manufacturer has a special program. Good luck!
Horizant is great but it is basically a form of gabapentin that lasts for 24 hours and isn't covered by most insurances whereas gabapentin and pregabalin are. And yes if you need it, check out their site as they do have a good program although I don't know if Horizant is available in Australia.
I am also an x-pramipexole user; my experiences and journey of getting off this horrible drug are similar to others. Everyone is different...duh.
At my last 0.0625 dose of pramipexole, I started a second 300 mg dose of Gab at 8 pm, prior to my normal 300 mg dose of Gab at 10 pm (bedtime about 12 am) and 10 mg Melatonin.
I take magnesium (Melaleuca's)and iron, as well. I
However, youal, I RARELY read about folks doing anything physical to help w/ "crazilegs". Every night before bed, I do a series of deep knee bends while wearing a 30 # weighted vest. I won't tell you how many, cause you'd think I am crazi. : ) Then, if crazilegs kick in during the night, I get outa bed and do a set of ## (without the vest) and...
...my other secret is CBD Sleep by Luvive. I have mentioned it before, with very little uptake or comment from youal. Try it...it works. It is not cheap, but it is safe and non-addicting.
I keep reading in this blog about recommendations for taking opioids...really, folks? That sounds really, really dangerous...I'd do a lot of deep knee bends before messing around with opioids...really, folks.
May God bless each of you (us) that suffer with this horrible "condition"!!!
Hi there, I'm also using a high quality cbd oil to assist with the withdrawal from Prami. I'm trying to not start another drug yet. In Canada we have cannabis stores as frequent as liquor stores! I at least feel relaxed at night, when the crazy legs start creeping up I take another dose. Unfortunately I'm still awake alot for now. A good surprise is that CBD/THC oil does not leave any morning grogginess or Pregabalin hangover that I found too debilitating. Thanks for the tip on deep knee bends. Take care, your story is very positive.
I stopped taking the Ropinirole and Pramipexole and have substituted them with 2 x 205mg Magnesium & Zinc capsules. Iv been symptom free (touch wood) for well over a year now. I also bought two wee leg vibrators which helped in the beginning when I came off those drugs. The capsules I buy are from HeyNutrition. xx
Hi DesertOasis, I chose to go cold turkey off the Pregabalin 4 nights ago, so yes I've had withdrawals. I didn't like how I felt on the higher dose of 250 mg. For example I was having bad RLS about a half hour after taking it at bedtime. Also the Trazadone did nothing to help me sleep either so I didn't take that more than 2 nights. I was on Pregabalin for 2 months total but only increased when off my last dose of pramipexole. The side effects were not pleasant. Again the good news is that I'm 9 nights since my last Prami but having nasty withdrawal from ALL these drugs. My doctor is supportive and wants to try a different antidepressant but I declined. I'd rather wash out then ask for a low dose opioid. Last night was my worst, I got 1.5 hours of sleep at 6 am. Tonight I will try some cbd oil with THC!
Its good that I never have issues with depression or negativity; I tend to be optimistic about most things. This episode will pass and I'll come out better in the end. Iron bisglycinate +C, and ashwagandha, plus a dose of cannabis oil for me tonight. 🤞🤞🤞 And how are you managing?
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