I have had Rls for about 20 years. I have been on Mirapex until augmentation set in. Got off of it in about a week which was an awful week. Then my Dr. put me on Requip. I was up to 10 mg a day. It worked for about 6 years by continuing to up the dosage. I’ve been on 10 mg for a year or two. Now I am going through augmentation again. I’ve been slowly reducing my dosage by about half a milligram a week. I’m now down to 3 mg. It’s been tough but manageable with the use of Tramadol 25 mg as needed. Now I’m starting to need 50mg. I am worried about the next few weeks as I get to the end if the requip. What I really want to know is should I be thinking about a replacement drug? My dr had suggested Gabapentin or Lyrica. Anyone know which is better or should I just try to manage the Rls without drugs before getting on anything else. I’ve been reading a lot of other people’s posts which has been very helpful. Any suggestions as to what next?
lyrica vs Gabapentin : I have had Rls... - Restless Legs Syn...
lyrica vs Gabapentin
Welcome to the forum. You will find lots of help, support and understanding here.
There is not much difference between gabapentin and lyrica. In fact you can switch from one to the other and back again which I do sometimes. The main difference is you need to split the doses of gabapentin whereas with pregabalin you can take it all at one time. Also pregabalin costs more in the US. The side effects are pretty much the same but some people find the side effects that bother them on one do not bother them on the other.
I always suggest you start with gabapentin since you can increase it more slowly and then when you find the dose that works for you, you can switch to pregabalin if you like.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off requip although it won't be fully effective until you are off it for several weeks. After you are off requip for several weeks 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 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? That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 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...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, C, 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 you are coming off requip faster than I recommend, and you may find it harder as you continue. I recommend reducing by .25 mg every 2 weeks.
No I don't think you want to try without drugs as you will be suffering from withdrawal. You were on 2 and a half times the maximum of requip which was 4 mg.
Thank you so much for your help! I will call my Dr. today to get my iron checked. Also, will slow down my withdrawal.
Please don’t ask your doctor to put you on Gabapentin just because someone on here recommended it. You’re doing great on the Tramadol. Are you on an SSRI or HRT? Those drugs will make the symptoms of RLS worse. Please ignore the suggestions for an iron infusion. Unless you’re anemic, chances are it will do little to nothing for your symptoms. healthunlocked.com/rlsuk/po...
If your ferritin is low, or even if it isn’t, one of the best things you can do for your symptoms is to take a highly bioavailable form of iron at night about two hours before bed on an empty stomach. Also, magnesium by day is a good idea. Good luck. You will get there. You’re 2/3 of the way home.
DesertOasis,
You had been doing well lately, but then you go and post this. Just what a new user wants to see - conflicting advice and bickering. He/she could easily conclude this is not a productive source of information and never return.
You make your opinions and conclusions sound like gospel and you belittle Sue and others in the process. You could be so much more helpful by presenting things as an opposing perspective, not the absolute right answer. Does Sue just trigger you such that you have to get snippy?
Most of us view this as a community. Keeping it that way requires respect for all. You have a lot of useful info to offer; please play nice 🙏🏻
I played nice for a decade. And despite antagonism (not by me) I was able to convey the importance of trying the nightly iron trick and dozens benefited on here. At the same time, I watched dozens of people try and fail on the infusions. They do not significantly benefit 60% of people who have tried it on here. I would have loved nothing better than for infusions to work.
I’m “hidden” and I was nice for 7 years. The woman who was critical of my post was a menace and a danger, but I kept my mouth shut when she made bad recommendations. Recommending iron infusions to people with 75+ ferritin in an effort to get their ferritin closer to 300 or 400 and lambasting oral iron as ineffective in raising iron past 75 is wrong, costly, a time waster and potentially dangerous. I’m not keeping my mouth shut anymore. Everytime an infusion is recommended, I’m recommending against it. Care to join me? healthunlocked.com/rlsuk/po...
Gabapentin and Iron infusions are not "just" recommended by "someone on here". They are recommended by the leading international RLS experts for the Scientific and Medical Advisory Board of the Restless Legs Syndrome Foundation in the Mayo Algorithm on management of RLS.
"because of increasing awareness of the high incidence of dopamine agonist–induced worsening of RLS symptoms known as augmentation and the risk for development of impulse control disorders, alpha2-delta ligands (i.e. gabapentin & pregabalin) should, when not contraindicated, be tried first"
"Intravenous administration of iron should be first-line iron therapy if moderate to severe chronic persistent or refractory RLS is present (see later for definitions) and either serum ferritin concentration is between 76 μg/L and 100 μg/L or a more rapid response is desired than is possible with oral iron."
You do need to review any other prescribed and OTC drugs & supplements that you are taking as many trigger or exacerbate RLS. Sue has offered to review for you if you provide a list.
It may be that because of the amount of time that you've been taking high doses of dopamine agonists you *may* find that you need a low dose opioid
healthunlocked.com/rlsuk/po...
No significant difference between infused and controls - in US at least. Worst outcome was those in augmentation. academic.oup.com/sleep/adva...
When the RLS patient has anemia, infusions look like the way to go. sciencedirect.com/science/a...
No, I take that back. Oral iron is just as effective for RLS and IDA as infusions. So infusions should almost never be recommended. pubmed.ncbi.nlm.nih.gov/384...
There was a marked improvement in both groups at six weeks. After six weeks on oral iron, ferritin won’t be raised all that much, yet there was still marked improvement in RLS symptoms in anemic patients.
CIRUS analyses are always good, and the fact that effects were "greater for those without augmentation than for those with uncertain and definitive augmentation" is certainly interesting if not surprising. I'd like to read the "Potential methodological problems in the study design" reviewed in the Earley et al article.
You are completely ignoring the fact that the Mayo Clinic recommends iron infusions AND that they will probably be highly effective in the future for those who present with RLS and are offered an infusion as first line treatment BEFORE any medication is prescribed.Those that have been 'damaged' by decades on DAs will possibly not respond to iron infusions because a properly functioning dopamine system is needed. If our receptors are damaged, the infusion won't work.
Also, the cause of RLS will determine whether iron infusions are an option. Until we have more research to determine exactly what has caused our RLS, we are 'clutching at straws'.
But for newly diagnosed, an infusion is the fastest way to get levels where needed. The nightly ferrous bisglycinate does NOT work for everyone on here.
More funding, more research and discovering the EXACT cause of RLS for each person will determine the correct treatment pathway.
Nah, iron is a salve, unless you’re anemic. Raising ferritin way high, even with the medication naive, won’t prevent that slow but insidious downward decline of our receptors. Everyone’s receptors decline, but we who are predisposed to RLS (meaning we have lousy receptors to begin with) just can’t handle that additional decline. I like what Chris did - up-regulated his receptors with magnesium. Rather than an infusion, I “believe” the best thing a person can do when they first realize they have RLS is to try to whip them into shape day in day out. Intermittent fasting, anaerobic exercise, diet ala Eryl, magnesium ala Chris, and maybe a few other natural supplements with a short half life that act similar to a dopamine antagonist.
Mayo isn’t the cavalry. We are. We knew a long time ago that infusions are mostly ineffective. These recent trials I copied and pasted confirm that. And they were performed by Earley and Winkelman. They concluded that the efficacy endpoints were not met. I think you and I, but not everyone on here, know that a 3.2 point difference in reduction between infusion and placebo (on the IRLSS scale) is next to nothing.
Let’s enlighten people about this historical clinical trial performed by Earley and Winkelman. The “markedly improved” endpoint at either 26 or 42 days was not met. What was met was a few more points shaved off the IRLSS scale. So with the infusion group, and people who claimed improvement therein, the “mean average” improvement was an 8 point reduction on a scale of 0 to 40. No one with a score of less than 15 was allowed in the trial. I believe most participants were around 26 to 29. An 8 point drop from 29 to 21 means you still have severe RLS. And in the placebo group the mean average drop was 5. That obviously won’t do us, with severe RLS, any good either. Yet, in the world of clinical outcomes, that 3 point spread is “significant.” Jools, did you buy into that word “significant”? I didn’t. I bought into their conclusion “we didn’t meet our endpoint.”
Here’s a synopsis directly from Earley
Importantly, oral iron had greater improvement for RLS patients in this clinical trial (average 11 points lower on IRLS scale) than the 8 points on my previously attached article. pubmed.ncbi.nlm.nih.gov/192...
I take it for reflux.
Pantoprazole made my RLS symptoms worse, I believe. Paris, what happened 20 years ago that you got RLS for the first time at age 49? Were you prescribed HRT back then or did you have some kind of surgery?
This study, from 2009, before augmentation will have hit most patients, can't be compared to the infusion trial. You would need to show a trial where oral iron is trialled against infusions and where the patients are on the same medications.
I did attach one that compared them. I’ll find it.
EDIT: Here it be: pubmed.ncbi.nlm.nih.gov/384...
Very helpful & informative. Thanks for sending.
I’m glad you like it. It’s worthless to me. The placebo effect is too strong and the bar for what they consider “significant” improvement is too low. There’s something screwy with their hypothesis that higher ferritin means less symptoms. In the full article, the infusion group had an increase in ferritin, on average, of 200 points. The oral iron group, at 6 weeks, had an average 23 point increase in ferritin. Yet their symptom improvement was nearly identical in both groups with oral iron being somewhat greater.
So what’s the magic ferritin number Jools? 45 - as was the average in the oral iron group at 6 weeks? 75? 100? 223 - as was the average in the infusion group at 6 weeks? Or does ferritin have nothing to do with RLS severity and it’s really only the increase in day to day “serum iron” that makes a difference?
As an attorney I know you realize that what goes on between opposing counsel in the courtroom is no reflection on their true relationship. After the gavel comes down everyone files out of the court house and opposing counsel grab dinner and drinks - both laughing all the way to the bank. I would have dinner and drinks with you any day.
I was never a litigator. I was a corporate lawyer -mergers, takeovers & acquisitions. But, I hear you...I, like you, will continue to try to find the answers. The one thing I do know is that there are many different causes of RLS and, accordingly, that explains why we all respond differently to different treatments.
Mergers and Inquisitions. My son is in private equity. I wanted him to be a scientist. Or any “ist.” 😶
Long, long hours. But, the money makes it worthwhile.
😕 Love what you do and you’ll never work a day in your life? My grandparents were tailors, seamstresses, fruit cart owners and worked day and night so children could go to school and become professionals. Dad was a social worker and mom a commercial artist and a little bit hippie but they expected my brother and I to be one of the three horsemen - doctor, lawyer, accountant. I just want my son to “get it.” We’re visitors here, we’re all broken, all of us, none of this is quite real, take a step back and observe things from a distance and try to understand that the only thing that makes life here on earth bearable is each other. Then it won’t matter what you choose as your career, you will have an interesting ride.
Would Pantoprazole make Rls symptoms worse? That’s the only other medication I take except ibuprofen.
I'm sure that Sue will see this and reply in due course, but yes unfortunately pantoprazole makes RLS worse for many like all proton pump inhibitors. Are you taking this for ulcers, reflux, oesophagitis, dyspepsia...?
That trial mirrors our cumulative experience on here. Fortunately, most neurologists and doctors don’t push/prescribe these infusions, including Dr. B. We on here push and push and push these infusions, going so far as to encourage people to pay out of pocket if need be. I watch it all play out time and again and it’s so painful. Members get all excited that this is the ultimate solution and they wait for weeks and months to get a blood test, then a doctors appointment then the usual refusal by the doctor then another doctor and another doctor and maybe at some point 6+ months later they get the infusion…with little to no long term improvement or short term for that matter. Despite one failed infusion victim after another, with each new member comes the same recommendation by the old guard. And for some of those victims, that $600 to $1000 cost of going private is financially disruptive and who knows what they’re sacrificing to make it happen.
That isn't the case. I know three people personally who HAVE benefitted substantially from iron infusions.The trial and research evidence also supports iron infusions for RLS.
Ferrous bisglycinate taken every night, as per your personal preference may help some people, but others, especially those who may have gut issues, will benefit from iron infusions.
We will keep recommending them.aa per Mayo and the people who have been helped enormously.
You’re not hurting me Jools. And I’ll keep recommending against it and in favor of oral iron.
I am under a marvellous haematologist for rls in the Uk and he totally supports an iron infusion for that thanks. Gabapentin and pregabalin are the first line treatment for rls now by my neurologist in London. I am doing really well on targinact and withdrawing from Pramipexole. Lots of help from this site , thank you very much. Sensible advice helps.
Hi Dot. You and I have chatted before. The rule is (my rule) you have to try 60mg of ferrous bisglycinate, on an empty stomach, about two hours before bed - ONE night. It’s better still if you have RLS when you take the iron. If your RLS is not greatly improved in about 90 to 120 minutes I will STFU.
Not my rule ? The iron disagrees with my stomach and takes a long time to make an impact. The infusion was immediate.
I would listen to your haematologist.
I did and had the infusion . He knew more about rls than the neurologist.
RLS-UK says most proton pump Inhibitors worsen RLS and several people on the forum have said it made their RLS worse. I would suggest gaviscon advance instead. Take it 30 minutes after eating, 4 hours before or 2 hours after taking iron Don't take antacids within 2 hours of taking gabapentin, antihistamines, some antibiotics, beta blockers or steroids.
Thanks again. I will try to go off pantoprazole. I have an appt with my dr next week. I’m going to talk to her about ferritin testing.
Any doctor that prescribed 10mg of Ropinirole for RLS after you had augmented on Mirapex should lose their licence.That is negligence. Did they warn you about the VERY high rates of Impulse Control Disorder ( gambling, impulse buying, hypersexuality)?
The FDA max dose for RLS is 4mg.
Show your doctor this article and follow SueJohnson advice.
They didn’t tell me anything about the recommended dosage or any side effects. Everything that I’ve learned has been through RLS.org and reading comments from other people. I’m interested to see how my brain functions after it has been cleared of these drugs. I really don’t know what to expect. Thanks for responding. All of this info is so helpful. I’m going back to my Dr with everything I’ve learned and see what kind of reaction I get. If it’s negative I’m heading to Vanderbilt.
You can't do better than Vanderbilt.
I’ll just share my recent experience:
I was on Pramipexole for 12 years before augmentation set in. I used buprenorphine to help taper off the pramipexole and continue to use it to control my RLS. I have tried Gabapentin and pregabalin a couple times, but didn’t get any relief. Dopamine receptors can be damaged by years of DA use, and that makes gabapentin, pregabalin, dipyridamole, etc. less likely to work for RLS, at least for a while.
It is certainly worthwhile to try all the non-pharmaceutical remedies you can - iron, magnesium, eliminating triggers (Pantoprazole and statins for me), etc. But I really couldn’t imagine surviving without an opioid. Buprenorphine seems the most popular, but methadone and Tramadol are also recommended. Every medication comes with its own side effects, and we all react differently. So be prepared to experiment for a bit, and hopefully find a doctor that will work with you to do so.
And read the Mayo algorithm if you get a chance - very informative.
Good luck!
Thanks for the info!
I have had restless legs due to kidney disease and anaemia. I loved getting an iron infusion, I could breath again. I have been on Pareximole for eighteen months, do not like it as I fall asleep suddenly and so have stopped driving. I recently went on Cannabis Oil and have found great relief with that and am now slowly coming off Pareximole in the hope the cannabis oil will take over from it. I also take four magnesium tablets a day.
blakeleyfoundation.org/rest...
Interesting read. Do you follow this protocol? I take magnesium, but not malate, vit D3 & K2, curcumin and a good probiotic. It never helped my RLS. But I'd be interested in hearing from someone who had refractory, severe RLS, follows this, and is now RLS and med free.
Yes I am. Probiotic (20 billion colony forming units per dose. Kept in fridge), Curcumin, Tri Magnesium (Citrate Glycinate & Malate) . I included Methyl B12 1000mg and Folate 400mcg. I take my Probiotic first thing in the morning. Do not have any tea or offee two hours before and two hours afterwards. I am still on half of 0.25mg Pexola (reduced from 1mg). I have had four nights of no RL. The one night it was due to bad eating. I made a cheese sauce and added Aromat which contains MSG and it is one of my food triggers. I have been taking them for three weeks. I am on no other medication for my RL . The only other medication is for my heart (5mg Zuvamor and Ecotrin) which I take in between my supplements as I found if I take them at night they affected my RL . So far it's working for me. It's been trial and error!! I'm sincerely hoping it too can help someone else!!!
Ahh. So you are still on a dopamine agonist. I was hoping it had allowed you to be med free.
I am currently halving the 0.25mg dose. My goal was to off the meds by the end of the month. We have been looking after our grandsons for the last 12 days. My daughter and son in law have gone to Spain and London. I definitely didn't want to take the chance of being tired and grumpy from no sleep 😂😂 Monday is cut off day. I will let you know what transpires once I withdraw completely. Just to add before I started the new regime I was having little to no sleep with my RL. As you know withdrawal from the "DA" is horrific!!!!
I remember it well. The worst trauma in my life.Go slowly ( half a 0.125 pill every 2 weeks) and expect no sleep or rest for 5 days after the last Pramipexole dose.
Most people need a low dose opioid to settle the severe withdrawals and most people start a replacement med around 4 weeks before the last dose of DA.
Good luck.
I was on 2100 mg gabapentin for many years. I also have a nerve issue which I am taking it for. My pain doctor changed the gabapentin to 450 mg Lyrica on Friday (today is Monday) and I have not had my usual RLS when I go to bed at all.) I hope I am not jinxing it!
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