Years ago, I read that one possible cause of RLS is the inability of one part of the brain to receive/assimilate iron. Does anyone know more about that? What part of the brain is it, and other than iron infusions (which don’t work if one has a history of using DAs), what can be done about it? Surely iron must cross the blood-brain barrier, so other parts of the brain are sustained, but as I understand it, one part has very low stores of it and perhaps consequent restless legs.
Low iron in brain: Years ago, I read... - Restless Legs Syn...
Low iron in brain
Written by
TimeEnd
To view profiles and participate in discussions please or .
Read more about...
28 Replies
•
pmc.ncbi.nlm.nih.gov/articl...
It's been known since 1953.
The first reports came out in Norway in 1953. Iron infusions were found to help.
The area of the brain is the substantia nigra.
Just read any replies to posts on here.We always asvise iron therapy as the FIRST step to treat RLS.
Our website has an Iron therapy page under Useful Resources.
By the time I learned about iron therapy, it was too late. I had been on dopamine agonists (DAs) for too many years. I’ve found that iron therapy (IV infusions) often reverse RLS IF! If DAs have not already damaged dopamine receptors in the brain. I did receive an IV infusion but to no avail. Now I’m looking into another therapy which I’ll share IF it works.
Low brain iron is a major factor in RLS: this has been known since the 50s, and both NICE in the UK and the AASM in the US clearly recognise this in recent publications.
I was unaware that "iron infusions (which don’t work if one has a history of using DAs)" - other than that augmentation on DAs can make everything more difficult! I will be interested to hear whether more experienced forum members confirm this...
Oral supplementation is of course possible, but can be slow. Have you had a morning fasting full panel iron test to include serum ferritin and transferrin saturation? The ferritin result will indicate whether iron therapy is likely to help you.
The following, including the downloadable PDF at the end, comes from RLS-UK. (This is a UK based forum, but we have members from all over the world):
"IRON THERAPY – SUPPLEMENTS AND INFUSIONS
Clinical research indicates that patients with RLS may have lower than normal iron stores in the brain and that iron therapy can be beneficial even if patients are not considered anaemic by normal standards. A ferritin level of 100µg/L is generally regarded as the minimum for RLS sufferers with some seeing benefits from levels up to 200-300µg/L.
Some people see immediate improvement from daily oral iron supplements while others benefit from incrementally raising the level of iron stores over time, measured by the concentration of ferritin in the blood via a blood test.
If oral supplements fail to raise ferritin level then intravenous infusions can be effective although these are not routinely available from the NHS for RLS.
In one study 60% of people with RLS benefitted from iron supplementation."
"Click here for our one page guide to Iron Therapy"
rls-uk.org/_files/ugd/b0a19...
My wife has had ferritin readings of 12 - 14 over a number of years but that was within normal limits according to the NHS so no action was considered necessary. With the help of Dr Murphy (Consultant Neurologist) my wife was given an intravenous iron infusion on Monday (5 hours) and since yesterday (Friday) has been without daytime leg jerks, flailing arms or occasional whole body shakes she has suffered for a few months. Cause and effect or coincidence? Given the lack of other interventions or changes in dosage of Pramipexole, I would suggest a cause and effect. The night-time jerks remain however, but with Dr Murphy monitoring my schedule for tapering off (and the advice of SueJohnson and Joolsg) I am hopeful of a successful outcome (yes, I know there will be bad times to get there, but my wife has only been on that DA since November, which is a relatively short time compared with many others). We are now down to half an 88 mcg tablet and will stop when a few weeks have passed. Dr Murphy had no trouble persuading our GP to prescribe Buprenorphine when he gives the signal. Optimistic at last!
That's great that she got the iron infusion and her GP prescribed buprenorphine!
Hope everything continues to ho well!
Iron infusions and iron don't work if the dopamine receptors have been damaged by taking DAs usually for a long time. Otherwise they do work.
What would be the definition of “a long time” Sue?
I don't have a definition and it can be different for each person but the longer one is on a DA the more likely that is to happen. And when that happens it usually means that gabapentin and pregabalin won't work.
Sue if you've been on Das and iron wont work and GABA won't work what choice do you have left
low dose opioids
Dear Sue, how long should I try before concluding that pregabalin is not working for me? Thanks for your guidance as always
if you are off DAs and your withdrawal symptoms have settled and you have been on pregabalin for at least 3 weeks and have increased it to 200 mg and it hasn't started to help your RLS at all and you aren't taking any other medicines that make RLS worse then your receptors are probably damaged and you should slowly wean off it by 25 mg every 2 weeks so, so you don't have withdrawal effects.
Then your only option is a low dose opioid.
Let me modify my answer. When I said "Iron infusions and iron don't work if the dopamine receptors have been damaged by taking DAs usually for a long time. Otherwise they do work."
Only 60% of people who improve their ferritin to 100 or more will have their RLS improved if their dopamine receptors aren't damaged.
Sue, you have referred to dopamine receptor damage several times. Is there a scientific/medical description of that? Is this "damage" a permanent thing (if anyone knows)?
Specific to my situation: I've been on Ropinirole for about 5 months. (Before that I was using gabapentin, for about 4 years.) The daily dosage of Ropinirole has never been above 0.5 mg but I already have augmentation happening. I want to get off it. I have an appointment with a specialist but not until June. I just hope there can be a regimen for getting off it successfully.
Welcome to the forum. You will find lots of help, support and understanding here.
I'm not sure of a scientific description but damaged dopamine receptors refer to a condition where the brain's ability to process dopamine is impaired. It is unlikely this has happened to you since you have been on it only 5 months, but you are wise to come off it,
I'm not sure why you stopped gabapentin and switched to ropinirole so until then I am going to give you my usual advice as though you were never on it.
Ropinirole (requip), pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.
To come off ropinirole reduce by .25 mg 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). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. 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 or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).
Have you had your ferritin checked? If so what was it? This is the first thing a doctor should do for RLS. 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 ferritin and transferrin saturation (TSAT) numbers and reply back here with them. 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, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, 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.
I also have a list of RLS experts in the US. If you tell me what city and state you live in I may be able to give you a name.
Thanks much for the detailed suggestions. I recognize much of it has been posted previously in response to others, but it's appreciated to get it all in response to my specific post. A few responses:
(1) A G.P. prescribed gabapentin after I reported some fairly severe RLS worsening (including myoclonus for 1st time ever) after trying an SSRI antidepressant SHE had prescribed. It happened within 2 days of starting that, and I discontinued completely. (There seem to be no awareness that increasing serotonin could be a problem with RLS sufferers, and I only learned that from my own reading.) Now I am taking bupropion XL 150mg. This G.P. also did not mention much of anything about the downsides of a D.A. like ropinirole, other than "there could be undesirable side effects." Again, only from my own reading did I realize this should be eliminated.
(2) Your offer about RLS expert suggestions: I am in Wilmington, NC but expect the only, or best options will be in the triangle (Raleigh-Durham-Chapel Hill) area and that is not impractical for me.
There is an excellent doctor in Durham and he does telehealth appointments. Dr. Andrew Spector 919-385-3000. He has written a book "Navigating Life with Restless Leg Syndrome," which is excellent and you can get it from the library. The only problem is his earliest appointment is in January although he might have cancellations.
Another one I have who might not be so backed up is in Huntersville near Charlotte - Dr. Peterson Giallanza, a sleep neurologist. 704-584-9909. He is recommended by SleeplessinNC. You can message her to get her experience. I don't know whether he does telehealth but most doctors will let you do this at least after seeing you for the first time.
This is interesting. Our 4 year old son with RLS (better since taking a LOT of iron supplements) was recently also diagnosed with an arachnoid cyst in his left temporal lobe (9cms). I wonder if this is connected...
Mars, please consider giving your son the iron at night, ONLY. About an hour before bedtime. Glad your son is better.
Iron metabolism can be severely impacted by inflammation in the body so you should first ensure that you have low levels of inflammation e.g. from infections, food etc. before supplementing iron as high levels of iron can be toxic causing liver damage and in extreeme cases death.
Low Brain Iron is indeed a leading cause of RLS. RlS patients fall into 2 categories - low serum (blood) iron, typically the storage protein Ferritin; and high serum ferritin. Low serum ferritin usually responds to iron infusion or oral supplements or dietary changes. The high ferritin level group simply (or not so simply!) just can't get that iron into the brain. That is the big question - why can't the brain access those iron stores? Good discussion here...
The RLS brain has a hard time STORING iron. Our brains are flooded with unbound “serum”iron. The RLS brain has, on average, 25% more serum iron than controls, per Dr. Earley. These Good Housekeeping type article are worthless when it comes to understanding RLS. The RLS brain lacks a protein known as H Ferritin which allows people to store iron anywhere in the body. We lack it in the brain only. The serum iron in our body, and our brains, drop at night and we get RLS. Try taking some iron at night, though it seems you have disappeared and we are all responding for naught. Read through this post AND replies and you’ll that it’s only “stored” iron aka brain ferritin that the RLS brain is in short supply of healthunlocked.com/rlsuk/po...
I haven’t disappeared. I am so appreciative of all of you who’ve responded. I have to factor in at least 25 years of various DAs (have had RLS for 5 decades). Mirapex (pramiprexole) gave me heart attack symptoms after 10 years so had to discontinue that initially effective one. I had mild augmentation—meds stopped working—but no awful withdrawals like others have had or are having. Anyway, I likely have no dopamine receptors left. Don’t know if that situation can be changed, either by repair or regeneration. Am now on low dose opioids, but since going on them, have developed mixed apnea (both obstructive and central). Am suspecting breathing suppression is caused by opioids and want to get off that drug, but have no other option that I know of. I know there are stage 3 trials of the active ingredient in Kratom underway, but who knows when a product will finally arrive on the market. So I keep asking and searching and gathering info to pass on to this group and to medical professionals who are willing to listen and help.
This has become common knowledge for RLS sufferers but just this week I had labs drawn for a brilliant hematologist I see about a clotting problem and he also addressed my low ferritin. Ferritin was 36 when I first saw him 9 months ago, and I received an iron infusion. Labs every 3 months since, Ferritin was 63 this week. I sent him a note citing the Mayo guideline and others to keep it in the 75-100 range. NOPE! It has to be below 50 for insurance coverage he says and sticks by that. I'm in the US, do any of you run into the 50 or below for insurance coverage? Thank you for listening!
Not what you're looking for?
You may also like...
Brain iron vs Blood iron
Has anyone read that in RLS patients brain iron can be lower than indicated by blood measurements?...
Iron in the Brain not in the Blood
Hi, first of all sorry for all my mistakes but english is my second language and theres a huge...
Fred the iron molecules tale : The end
This will only make sense if you’ve read my previous post...
Role of Dopamine and Brain Iron stores
How is it known/thought that dopamine plays a role in RLS? So, is there a test for this or research...
Dr. B on Iron Infusions
http://video.google.com/video play?docid=-7766971241156535124&hl=en
Within the above transcript is...
Iron levels - feedback
How fast is brain iron deficiency restored after IV iron?
Restless legs and iron anaemia
Iron (not ferritin) test
