thank you Sue for your advice on Pragabalin, my doctor has now increased my dose to 150mg which is a lot better, I have been on this dose for 7 days.
I have some side effects, like headache, bowels not as bad as with gabapentin, I’m hoping these will pass, my question is should I be taking iron tablets, I do take multivitamins in the morning.
Have you had your ferritin checked? That will tell you whether you need to take iron tablets. Do you want me to give you the instructions for this again? I'm sure SalemLake will reply to you to take one every night and that will help your symptoms after an hour as that works for a few people, but you still want to check your ferritin and make sure your iron results aren't too high to do this and to know what your ferritin is as you might need an iron infusion.
Just a question, I have blood test regular, will this not show my iron levels.
No. You need to ask 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.
Oh Sue, you don't need to credit me with this cosmic miracle. You just need to tell everyone about it, no different than you do the two dozen other things (ie compression socks, hot baths, massage) that mostly don’t work or have any kind of scientific basis to them. Just think of all the people you could help by mentioning (and emphasizing) this treatment in the first place. 💫
And it can’t be ferrous sulfate, they have to try the trick with ferrous bisglycinate. Everyone who comes on here MUST be told about this. It costs on average $10 and one or two nights of their time. If it doesn’t work then they can move on to massage guns, weighted blankets or iron fusions. None of which will provide the night after night tremendous relief (for decades and counting) that the ferrous bisglycinate can.
Hi SalemLake, certainly happy to be telling people to try fe bisglycinate at night. I am not finding a lot to show significantly better absorption, some quotes of 'double' the bioavailability but not seen the studies. Also the dose of elemental iron is generally way lower (certainly less than half) so not sure if it is the absorbed dose of Fe that is the greater benefit. Was there something else about it that makes a difference? Certainly seems to cause less gut issues. Obviously there are heaps of people taking their iron at night and not having the RL switched off. I certainly dont see and published studies on using bisglycinate in this way. Thanks for your contributions.
See third reply-which is mine. I list out 14 people from here who got relief. It was a quick search via search box on here. I know there’s double that number. One day I’ll search some more. Try it, you might love it too 🤙
healthunlocked.com/rlsuk/po...
SL,
14 or 28 happy people is still not what the medical community count as proof. Placebo controlled trials and all all of that. But I will recommend it and maybe look to see if we can do a trial. Maybe compare taking it in the morning or in the evening. Or vs a placebo. I posted this to an earlier post of yours and will put it here. Not trying to bust your buns but looking for the underlying neurobiochemistry to explain things.
From the IRLSSG -
Evidence-based and consensus clinical practice guidelines for the iron treatment of restless legs syndrome/Willis-Ekbom disease in adults and children: an IRLSSG task force report
Richard P. Allen a, *, Daniel L. Picchietti b, Michael Auerbach c, Yong Won Chod, James R. Connor e, Christopher J. Earley a, Diego Garcia-Borreguero f, Suresh Kotagal g, Mauro Manconi h, William Ondo i, Jan Ulfberg j, John W. Winkelman k, On behalf of the International Restless Legs Syndrome Study Group (IRLSSG)
This line - CSF ferritin was found to be lower in RLS than controls, and also positively correlated with serum ferritin [37]. Earley CJ, Connor JR, Beard JL, et al. Abnormalities in CSF concentrations of ferritin and transferrin in restless legs syndrome. Neurology 2000;54:
I guess they are using CSF ferritin as a marker for Brain iron Deficiency (BID). Higher serum ferritin and higher transferrin saturation is used to be a marker for increased iron availability to cross the blood brain barrier. There seems to be a genetic weakness in transport of iron into the brain behind RLS. The idea behind pushing up the ferritin is for more iron to 'flow' into the brain. Which is why I am following this up. Will taking bisglycinate increase CSF iron in an hour or 2?
Yeah it might flow into the brain after pushing it way high with infusions, albeit temporarily, and after two to eight weeks we might get some improvement. Iron infusions for RLS is just plain mad science and has never been properly tested. Results are ill-defined (mildly better, moderate improvement, from 38 to 29 on the RLS scale). Until a majority of people get substantial improvement for a sustained period of time I’m not recommending infusions. And supposedly, oral iron can’t push ferritin all that high and probably nowhere near high enough for that spill-over to occur. Ask Kakally who feels the spill-over for her occurs closer to the 700 mark. However, it works amazingly well for people with iron deficiency, or near iron deficiency, anemia, which triggered or greatly worsened their RLS in the first place. These people get same day relief. So do people with a condition called “Pica.” They get same day eradication of symptoms. I don’t understand why it should take RLS patients (without anemia) weeks, if not months, to realize any improvement in symptoms from the infusion. Do you know why? I don’t like anything about infusions for RLS or pushing ferritin into abnormally high levels.
You realize, of course, that the vast majority of people with IDA will never feel so much as a twinge of RLS. The people who do feel a twinge are pre-disposed to RLS and sadly at some later point in their lives (as age takes an even further toll on their receptors) they may develop symptoms again despite no longer having IDA.
I do understand the physiology behind RLS. I will provide a previous post of mine where I explain why the iron at night thing works so amazingly well.
We don’t need the medical community for the iron at night trick. It’s an over the counter substance. Besides, I consider all of us the medical community/experts that are conducting clinical trials and marketing the best candidates. We don’t need the cavalry, we are the cavalry.
I blocked and copied the following:
“That is all I need for my RLS - 50mg of ferrous bisglycinate on an empty stomach about an hour before bed. The RLS vanishes in one hour for one night. I researched this phenomena and found out that serum iron (NOT ferritin) plummets at night with a nadir of midnight. Because we with RLS have VERY little stored BRAIN iron (and a lousy dopamine transport system), we rely very heavily on that serum iron. When it drops at night our RLS rises 😅. ”
You see RLSLearner, I believe if ferritin was a major player in the RLS arena then we would have RLS 24/7/365. Yet we don’t? It’s a disease of the night time. Do you know of any other condition that has a circadian rhythm? With RLS you really need to think outside the box…I hate that cliche…but it fits. You have to think in terms of what else is going on inside the body that is on a circadian rhythm as well. It ain’t ferritin.
Yes RLSLearner, I believe the ferrous bisglycinate enters our bloodstream within an hour and is sucked up by our brains LIKE NO TOMORROW!!! I doubt any of it is stored for a rainy day, if that’s what you mean??? It is used right then and there by our brains and it likely does not raise CSF/stored brain iron right then and there.
I have a question for you - if we have low brain iron 24/7/365 then why don’t we have RLS symptoms 24/7/365? Hmmm? Well, I’ll tell you why - it’s because our brains don’t have a problem sucking up free floating iron in our bloodstream (aka serum iron) during the day when it’s plentiful. You see, iron is the grease and glue that keeps our dopamine receptors chugging along. And luckily, serum iron (not ferritin), is plentiful in humans during the day, but then drops by over 60% at night and what’s left is vied for by all our organs. The non-RLS world is not bothered by this drop because they have plenty of stored brain iron (and great D2/D3 receptors) to fall back on. We, with little to no stored brain iron (and pathetic D2/D3 receptors), are greatly bothered by this drop in serum iron (not ferritin).
With the iron at night trick we are literally sneaking our brains a little extra serum iron when it needs it desperately. Lucky for us, the iron gatekeeper (aka hepcidin), is very low at night and I’m guessing a good portion of that ferrous bisglycinate is able to enter our bloodstream. There! Satisfied?
Oh, and, I don’t care about what it says on the bottles of different iron types in terms of milligrams or the improvement in ferritin realized by anemic people with different types. Ferrous bisglycinate is the most bioavailable one because it is broken down into amino acids already, the others are not. That means our guts have to break it down to that form, hopefully. When you’re young and healthy and your gut could probably breakdown an iron nickel then the ferrous sulfate might be ok. It’s not ok for all of us. It’s going to enter our bloodstream much slower than the ferrous bisglycinate and much less of it will do so. Whether it’s a headache or RLS, you want fast relief. Ferrous bisglycinate is the fastest. I’ve noticed several times that people with extremely low ferritin (in the teens) can take ferrous fumarate and it will work just the same as the bisglycinate? healthunlocked.com/rlsuk/po...
I read that when someone is anemic, hepcidin is not triggered with the consumption of iron. So these people can actually take iron two or three times a day and have good absorption each time and the form of iron probably doesn’t matter as much for these people either.
25 mg of elemental iron in ferrous bisglycinate is as effective as 50 mg elemental iron in ferrous sulfate Https://pubmed.ncbi.nlm.nih.gov/24152889 pubmed.ncbi.nlm.nih.gov/293...
Ta Sue, preterm infants bisglycinate 4x more efficacious. Although they did not test vs 2 x does and may have got the same result, hmm they did not test vs same dose to see if they got the same result. But it does then link to -
Ferrous bisglycinate 25 mg iron is as effective as ferrous sulfate 50 mg iron in the prophylaxis of iron deficiency and anemia during pregnancy in a randomized trial (which was probably the paper you were referring to.
You're right.
Ferrous Bisglycinate taken this way is to RLS what aspirin/ibuprofen is to a headache. Aspirin helps a whole host of people with their headaches as well as not helping a whole host. The point is, doctors should tell patients about aspirin when presenting with a headache and all the first responders on here (you know who you are) should tell people about the ferrous bisglycinate at night trick, first and foremost. It’s relatively cheap, relatively benign, and if it doesn’t work that first or second time then move on to something else.
AND, it’s only people like me who need to take it every night. People with sporadic RLS or breakthrough symptoms only need to take it when symptoms pop up. PoorRichard is a good example:
PoorRichard profile image
PoorRichard
2 years ago•14 Replies
I am experimenting with magnesium following some recent posts. I believe someone (jools?) is taking 100mg. I'm using magnesium bisglycinate and took one (88mg) last night, about 30 min before taking my alternate day iron bisglycinate (25mg) [on an empty stomach, of course]. The prior night had been RLS free with no meds or supplement. Last night, I drifted off to sleep (yay) but suddenly was yanked awake by a giant PLM contraction. It was all downhill from there - major RLS episode. Finally at 2am a 2nd iron dose seemed to calm the system. I'm feeling frustrated and discouraged. I'm close to resuming gabapentin* but, first, a few questions:
- Is timing of the magnesium important?
- Most medical advice is to take iron supplement on alternating days to aid in absorbtion - does taking it everyday (or, like last night 2x) generate any issues, like increased hepcidin?
- Similarly, is there a build up of tolerance to iron that makes it less effective?
- I've been vigilant about known triggers - why was two nights ago with no meds a "successful" night and lastnight such a disaster?
- What's the word on dipyridamole? Should I look into that instead of gabapentin/pregabalin?
*Note - my reluctance to resume gabapentin is because of side effects - loss of daytime focus, especially. I am a woodworker hobbyist. I am at risk around potentially lethal equipment if my wits aren't about me.
Hi. Can you please say again what strength ( mg) of ferrous bisclycinate you are talking about.
Hi Tennis, I take 50mg.
I'll leave that to you because I believe people should have a full iron panel first since a few people might have results that are too high to safely take iron every day.
I tested my Ferretin and it was 59.
Take 325 mg of ferrous sulfate or 25 mg 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 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 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 to slowly raise your ferritin. Ask for a new blood test after 3 months.
You can also try SalemLake's suggestion above.
Any luck Tennis?
I started pregabalin and gradually went upto 150mg but now I have started having breathing problems and hoarse throat which are not going away. So have to reduce dose or stop it.
I’m taking magnesium daily and am thinking of starting on Gentle iron’.
Yes, think on it. As you can see from this post, Hublot appears pleased with the iron and may try to reduce his Pregabalin from 150 to 100. The iron should work that very first night.
Sue, Sue, Sue, you don’t even recommend it after they’ve had the iron panel done nor when they tell us their iron is always in the normal range. You’re a non-believer 😱 as was Nightdancer. That woman shut me down every time I came on here. We’re talking over a decade now and dozens of people helped by the iron at night thing. Where is Nightdancer these days?
At what time if night do you take iron bisglyinate, and the doseage the ones I have are 28mg
Hi Hublot, I take 50mg about an hour before bed on an EMPTY stomach and it’s ok for you to take 56mg. It provides complete relief of RLS symptoms in one hour for one night for me and many others on here. I’m not sure how brave you’re feeling these days coming off of Prami and having your RLS stabilized, but think about taking the iron a few hours before bed AND before the Pregabalin and see how things progress. If RLS is greatly diminished or non-existent think about taking a somewhat lower dose - if that can be done.
I’ve been noticing the craziest thing lately. People on here are able to go from Prami to Gabapentin or Pregabalin and then to just iron or magnesium. In other words, don’t necessarily get complacent with the idea you have to take Pregabalin for the rest of your life. Im not sure the best type of magnesium, but I’m going to commit, this time around, to taking it everyday. I have a type called magnesium threonate because allegedly it readily crosses the blood brain barrier. BUT, many people on here have had luck with simple magnesium glycine. See below.
Scroll through all comments in this post and you will see this member is now down to just magnesium:
healthunlocked.com/rlsuk/po...
thank you Salem Lake, sound advice I really don’t want to be on Pragabalin I still have some of the same side effects I did with gabapentin, it would be great not to able to take that type of medication in the future, I have had RLS for as long as I can remember and I’m now 62, my son is 39 is not on any medication he also has RLS , I told him about the iron he is going to try it.
Any luck Hublot?
Taken the iron for 2 nights and I do feel better, I’m on 150mg Pragabalin I long should I waite before I try and decrease it. Hublot
Wow!!!! You try immediately. By 50mg. If you feel any RLS in bed you get up and take that other 50mg. This is a no suffering zone. Then wait a few more weeks to try again. The few more weeks is NOT so much to raise ferritin as to give your dopamine receptors more time to return to baseline, post DA. And possibly for the daytime magnesium to up-regulate your receptors. I’m praying your son has good results as well!!!
I do feel much better with the iron tablets as per my last post, my only concern with taking the iron every day is causing constipation, any advice in this, Hublot
This form of iron is supposedly non-constipating.
Thank you, that’s a relief
How long can you take iron for, can I do any damage taking if every day, I do feel
Much better taking it, last night I only took 28mg as I was worried I may be taking too much, but I had to get up early hours and take another 28mg then got relief very quickly.
Hublot, I never saw this reply. It’s quite incredible isn’t it - that immediate relief from something as simple as 28mg of ferrous bisglycinate. All the wasted years 😎
I must admit it is good, I am getting much more relief it, I take it a couple of hours before I take 159mg Pragabalin, I am sleeping so much better, the side effects of the Pragabalin have certainly improved, although since coming off pramapexole then into gabapentin now tge Pragabalin I do feel my weight has increased, I hope this will settle down.
Hublot, here you are doing well on the iron. 56mg, not 28mg. And 150mg of Pregabalin which you wanted to continue lowering. What happened?
With iron tablet poisoning the peak iron levels are at 4 - 6 hrs.
Have you tried the iron at night trick with your wife, doctor?
She had been on oral iron for years, dont know what one(!). Iron infusions definitely helped her. Then I put her Dipyridamole. But will go back to iron bisglycinate and see.
I am taking Pregabalin 100mg before bed time
I have started taking a gentle iron capsule on alternate days one hour before dinner with a 500mg vitamin c tablet.
I take a magnesium glycenate capsule ( 280 mg elemental magnesium) one hour after dinner.
I’m sleeping better but am constipated and feel some dizziness particularly in the morning when I get up and if I sleep on my back which I avoid.
Should I change anything in the above treatment/ schedule.Also should I gradually reduce pregabalin which maybe causing the side effects as above.
Should I switch the timings for Iron and magnesium caps.
D.O
So you are suggesting that I take the magnesium an hour before dinner and the iron an hour after dinner before bed. -right.
Hi. DO
Sleep is better. But constipation is a problem. I don’t know whether it’s due to the pregabalin or the magnesium or iron.
Hi, as I said before my iron tablets are 28 so I’ve been taking 2 obviously 56 then I started to take one I’m getting a bit of RLS early hours is this because the Pragabalin needs increasing I’m on 150mg or is it the iron, I was hoping to decrease the Pragabalin, I no this is all trial and error and I am feeling much better and getting more sleep and less trotting off to the loo, your help has been great. 4 months ago I had a knee cap replacement after having 2 knee replacements 5 years ago, and now they are looking to replace the other knee cap, this obviously has not helped my RLS , but I have managed to come off pramapexole which I had been in for a lot of years onto gabapentin, did not agree with me and now her I am on Pragabalin and feeling much better.
Hublot, it sounds like you do better on 56mg of iron. Rather than trying to lower the iron, maybe stay at that dose and instead try to reduce the Pregabalin. If you can’t reduce either then stay right where you are for a few more weeks and enjoy the sleep. With each passing day your dopamine receptors are crawling back to baseline. At some later date you might be able to lower one or the other - preferrably the Pregabalin.
What was your RLS like before the DAs and why were you prescribed them in the first place? What other medications are you on?
I’m on Etoricoxib 60mg I have arthritis hence the knee replacements, I now have it in my feet and hands some finger joints, HrT but I am coming off that so am only taking it 2/3 times a week, paracetamol now and again.
I’ve had RLS for 30yrs or more it’s normally from tea time onwards, when you really need sleep.
I hope it does too, you no the saying we can rebuild you, I’m well on the way with different joints being replaced. Thank you for your advice, it’s nice to know someone us there to help.
Medications for RLS recommendations 
Ropinirole
methadone and tolerance
what isthmus usual maintenance dose of the Neupro patch?
