Success with iron infusion (sort of) - Restless Legs Syn...

Restless Legs Syndrome

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Success with iron infusion (sort of)

Graham3196
Graham3196

In November I had an iron infusion with the aim of raising my ferritin from 105 to 350. A blood test about 2 weeks later showed ferritin of 343. I had read that curative effect of raising ferritin can be slow - up to 12 weeks or end of February.

End of Feb came and went without magic. But it was waiting to surprise me at the end of March my few remaining traces of RLS disappeared. After a couple of weeks they sneaked back a little bit but intermittent and very low volume. I have had another pathology test but no results yet so I dont know if the ferritin is reducing.

I still have a bit of RLS but I have gone from going to sleep at 5am every night to annoyance one or two nights per week. In fact I have trouble being sure that I have RLS or if its just a bit of arthritus or something. Cup of tea and back to bed usually with my legs completely relaxed. I have been on the FODMAP diet for a long time and I am now allowing myself to be a bit loose with the diet. I ate something with onions and garlic the other night and suffered nothing! Maybe I could go on a normal diet now but I'm scared that if I stir the beast too much it might not just go away. When I have a few years of calm sleep I'll start pushing the boundaries.

Another change I have made very recently. I used to find that my RLS was related to indigestion and I would take a "Quikeze" tablet which worked well until I was about 40 years old. A couple of weeks ago a doctor suggested I try Nexium, one tablet before food every morning. I haven't had indigestion since so that might be meaningless or it might be significant.

I have no idea if the following is related but at the same time my painful knees and feet have improved 500% At the cinema my friends had to wait while I found an elevator because the stairs were too much for me. Now I am happy with the stairs. Can this be related to the RLS?

42 Replies
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So pleased for you, Graham. That's fantastic news. It's always great to hear the good stories

Thanks

I am really happy for you! Hard to say with the multiple recent changes what was the crux of the change. But never mind, it works. And I hope it will be like this for a long time. Forever?!

Graham3196
Graham3196 in reply to LotteM

Thank you. The relief from the iron infusion came first. I wish we all shared the same breed of RLS so I could just pass the success around!

Excellent news.

Congratulations, Graham! That's wonderful news!

I'm so glad Graham that you've found relief. You've been so helpful to so many with all your information that it's only fair that you get some relief yourself. If only we knew which aspect of the treatment is the bit that is the key... buy who cares! If something works then make the most of it.

I'm trying to find some way of getting an iron infusion. my GP has referred me to a hematologist who may/may not be happy to be innovative. My GP isn't happy to try something himself that has so little evidence base at the moment. Might be a long time though to get an appointment through the health system even if she is knowledgeable about the RL connection. I shall go armed with information though. :)

Interesting about the stairs too? Do keep us up to date with how things develop and especially how your ferritin levels continue. My GP's comment is 'how often can we keep doing it even if it does work!'. My response was... "how long can I stay sane/alive with RL driving me to the brink of total despair?' Swings and roundabouts!

GPS are reluctant to give treatment to raise Ferritin level to 300 due to associated risks of stroke etc. ..hematochromatosis. I’ve gotten mine To 103 thru oral iron and advised to stop the iron medication now . But I hear you loud and clear about not being able to live with the torture of RLS.

Graham3196
Graham3196 in reply to Muftah36

I haven't seen any GP or "experts" saying that above 100 is dangerous, Perhaps you have a history of some illness that has weakened your kidneys or liver or something? Everyone ( admittedely a sample size of about 5 GPs and a couple of others that might be more expert) has said they have no problem with ferritin at 500 and one said he would be happy with 1000.

The problem is that it seems to be almost impossible to reach 300 on oral supplements but talk it over with your GP and see if you can work out if he has some reasonable fear for your health. He might be cautious for a good reason in your case.

Muftah36
Muftah36 in reply to Graham3196

I have no history of kidney or liver disease. My GP said that medical studies show that there is little if any benefit to raising ferritin and risk of other complications is increased . Do you have a study or article that I could refer him to ?

LotteM
LotteM in reply to Muftah36

Muftah, sorry for the late reply. But, yes, there are several studies and there is one major review and recommendation from the IRLSSG ( International RLS Study Group): sciencedirect.com/science/a.... I hope your gp is willing to read and open to the possibilities. Good luck.

I am so pleased for you. I love to hear of anyone getting relief and it helps us all to keep optimistic. You deserve ease as you (any many others on site) spend time trying to help others.

Graham3196
Graham3196 in reply to Jelbea

Thanks. This is a wonderful forum and so many people have helped me understand a bit about what ails me. Unfortunately it also has a sad side with so many people reporting bad medicine making their lives miserable.

Hi. I am pleased you are getting some results and not taking horrible mess. I saw neurologist last week who took bloods for ferritin thyroid. I am going to start gabapentin 100mgs daily. Three times a day and take iron supplements

Thank you for your good wishes.

When your pathology report comes back ask for a copy of it for your private records. Mnay doctors just say it's satisfactory because they don't understand the importance of ferritin to RLS patients. If you ferritin level is less than about 350 then beg, plead or bribe your doctor for an iron infusion to bring it up to about 350 (Always provided that your doctor agrees that you don't have any other medical condition that precludes this.)

Oral iron will take ages to bring up your ferritin and is unlikely get it high enough in any reasonable time. If you get an iron infusion and your ferritin goes up to 350 and your RLS doesn't go away then that is a major advance in knowing what has to be done. If your RLS does go away then you know what causes your RLS and you only have to monitor your ferritin and top up as required. According to Doctor Buchfuhrer if your ferritin fades away in 6 months or a year then your doctor should be looking for some sort of internal bleeding. He says a healthy body should have no trouble maintaining a high level of ferritin on a normal diet.

That’s fantastic news Graham. I have heard that we RLS folk have difficulty holding onto the iron so may need regular infusions. It’s very encouraging. Which hospital and doctor gave the infusion and was it Injectafer?

I’m seeing a haematologist in June and am hoping to persuade him to give me an infusion so every success story I hear on this website is useful.

Long may it continue.

Graham3196
Graham3196 in reply to Joolsg

Thanks for your support.

I am in Australia so it may not be relevant to you but I will give the details for any other Aussie readers.

I can't find a record of the infusion I had. I will check on Monday and let you know. I am almost certain it was Ferinject which is marketed as Injectafer in North America.

The job was done in Cabrini Hospital in Malvern, Victoria.

My doctor was

Doctor Fleur Dwyer, South Yarra medical

5/102 Toorak Road Vic 3141

98201144 She referred me to a doctor in Melbourne,

Doctor Robert Lefkovits

Level 7 15 Collins St 96545925

Recently I was told that Dr Dwyer is now set up to do infusions in her own rooms with all the necessary safety preparation. (might be only a syringe of adrenalum and an oxygen bottle?) I don't know if she will apply an infusion for a patient who does not meet the official definition of anemic. She now understands about ferritin and RLS so she will be helpful, one way or another. If she will do it she will be cheaper than a hospital. (The Hospital was AUD500)

Incidentally Doctor Buchfuhrer said in an email that if your ferritin fades away after 6 to 12 months your doctor should be looking for some internal blood leakage. Not to say that you wouldnt get a top up to maintain an RLS free condition while looking for a cause of the decrease in Ferritin.

I am about (tomorrow) to get the result of a blood test to see if my body has maintained the post infusion level of 343.

As I've said elsewhere I encourage you to beg plead threaten or bribe your doctor into cooperating with you.

Good Luck

Cheers

Joolsg
Joolsg in reply to Graham3196

Thanks so much Graham. That’s incredibly helpful and useful information.

I’m in London, England and my RLS neurologist ( apparently an expert) is Professor Choudhuri BUT he refuses to consider iron infusions if your serum ferritin is above 50. I honestly despair of neurologists here in the UK- they seem blinkered to anything other than dopamine agonists.

Hopefully the haematologist I am going to see will perform an infusion. I’ve written to him and he’s agreed to see me. He could have written back to say it’s not something he would consider so I’m hopeful. Fingers crossed.

We need to keep up the pressure on our doctors because they “ know nothing “ as Ygritte would say to Jon Snow.

Thanks again

Graham3196
Graham3196 in reply to Joolsg

Do you have quotes from Doctor Buchfuhrer and references to Johns Hopkins? I expect the Doctor Buchfuhrer carries little weight to someone with Professor in front of their name but Johns Hopkins is a world known name and as far as I can tell they seem to be respected.

I understand that the doctor has a problem if the Gods who publish the rules say that infusions are for anemia and not for RLS but I can't understand the resistance to any infusion that so many doctors seem to have. No one has been able to tell me of any harm that can be done. A couple of doctors said they saw no problem in raising ferritin to 1000 but they still weren't going to do it. Our biggest pathology lab lists 30 to 500 as the normal range. It makes Doctor Buchfuhrer look very cautious.

I'll send my latest list of possible actions which has quotes and (I think all) sources for Dr Buchfuhrer. Maybe someone should start a clinic for RLS infusions in the Caymen islands or Gurnsey. Or on a cruise ship!

Joolsg
Joolsg in reply to Graham3196

Lawd yes- a cruise ship round the Mediterranean- a load of people with RLS sitting hooked up to a drip watching the sun set. It’s a great idea & someone could carry out before and after results.

Fabulous news about the iron.

Maybe as you're sleeping better you generally feel an improvement in well being and this would benefit your mobility. I can't imagine any direct physical link between RLS and knee/foot pain. It's possible I suppose that RLS being a sort of hypersensitivity. that sufferers are more sensitive to pain. Relieve the RLS sensitivity and it may relieve

A bit of a search reveals Quick-eze is an antacid, that works by neutralising acid, i.e. it's alkaline. It has magnesium in it which may have been helping your RLS. It doesn't however stop acid production. If you've had excess acid for years, then despite the antacid, the excess acid will have caused some damage.

Nexium apparently is a Protein Pump Inhibitor (PPI) which actually stops acid production and may allow any acid damage to heal. Sounds much better for your situation.

Incidentally, gastric ulceration is now treated with a combination of a PPI and an antibiotic as in a lot of cases, it's caused by an infection H. pylori.

Another bit if a rant really, sorry.

I see these adverts trying to sell medications which promise relief for things without any consideration of the underlying cause. One is a company that advertises a painkiller by portraying how it can, apparently miraculously, transform your mobility by relieving your back pain, without any mention of why you might be getting back pain. In fact, I believe one of their ads was banned and they were fined for saying that their product could cure back pain.

Another advert portrays someone who has terrible indigestion every day having her life apparently miraculously transformed by an anti-indigestion medication with no mention of why she might be getting such terrible indigestion ever day.

I read today about a pharmaceutical company executive who has been convicted for the way in which an opiate product was sold, including practically bribing doctors into prescribing it.

The "lesser" drug touting for over the counter medicines doesn't attract the same attention, but who knows how damaging it may be.

The trouble with allopathic medicine is it only looks at specific symptoms, not the whole person.

A more holistic consideration could be beneficial.

I really admire your self-discipline in sticking to a diet. I hope the success of the iron treatment means you can now relax a bit and hope that goes well.

Your "rants" are interesting and informative.

Thanks for the information about the indigestion cures. If I have any more problems I must mention to my doctor that my innards might be a bit damaged by antacid treatment.

How do you get not only the dr but insurance to pay for iron infusions when my ferritin is at 85 and insurance won't pay for it because I am in their normal range? This is so unfair. I see others getting relief and yet I still suffer because I can't get either dr or insurance to cover and I can't afford to shell out $900 per infusion...and it would take multiple infusions to not only get my numbers high enough but to stay that way. 😢

The business of iron infusion being only for people who are anemic and not for RLS seems to be the rule in Australia and the UK. Are you in the US? I guess we have to lobby our governments to put it on a list of recognised treatments. I think that was what the recent survey in England was all about. Letting them know how serious the problem is.

The slightly better news is that you may not need more than one infusion to get your ferritin up and that you should not need regular infusions to keep it up. Doctor Buchfuhrer says that once your ferritin is up it should stay up unless there is some thing wrong that needs to be fixed.

I hope you can find a way to get an iron infusion.

Any news about your results Graham?

Yes I finally found that my RLS had improved just at the end of March, about 14 weeks after the infusion. I had several weeks of no RLS symptoms. Then I have a different problem that also wakes me and sometimes this seems to blend into very mild RLS. Its a bit confusing. To add to the confusion my ferritin has dropped from 343 6 weeks after the infusion to about 240 about 2 weeks ago. I am following this up and I have decided to try to get ferritin topped up to around 350 again and then see if it drops after that. Its just confusing.

How frustrating! It just doesn't seem to make much sense does it. Good luck with what you do. :)

Do you have links to studies these doctors have done so that I can show my GP and neurologist? I have received two injectefer Infusions and my iron is still only at 51 and ferritin is I believe 143 but they are not returning my calls about setting up more Infusions. I believe they are satisfied that I’m in normal range and they don’t know the benefits of rls patients to have high levels TIA

Eitheror
Eitheror in reply to Maillady1

Hi Maillady, oddly enough there are numerous people at this point who get relief by taking a highly bioavailable form of iron (ie ferrous bisglycinate) in the evening on an empty stomach. Nothing short of a miracle for those of us for whom it works. Not a cure, but for me and many it provides complete relief for the night. There's been times that my RLS has been so bad I have had to take two capsules of the 25mg Gentle Iron (aka ferrous bisglycinate). Or sometimes I take one capsule and apply an iron transdermal patch called "PatchMD." It has been so effective for so long for not only myself but several people on here that sometimes I find it hard to believe that it doesn't work more universally for RLS sufferers. Sometimes I wonder for those who have tried it and didn't get relief if they simply failed to take a high enough dose or the right form of iron. The bisglycinate is a "non-heme" form of iron that comes from plant sources, but there are also "heme" forms of iron such as Proferrin that comes from animals. I believe that heme iron is absorbed differently - via the stomach - rather than the small intestine where non-heme iron is absorbed. So for some reason maybe for some people heme iron would work better. It seems that with each passing month I read more articles about RLS and brain iron deficiency. Recently I read that the amount of unbound iron in our bloodstream drops at night, precipitously. Maybe that's why most of us tend to get the worst RLS in the evening. Since the RLS brain is unable to store iron, allegedly, we probably rely heavily on the iron in our blood and when that drops at night...well things get ugly.

Eitheror
Eitheror in reply to Eitheror

The PatchMD I mention above is actually called PatchMd - Iron Plus Topical Iron. The absolute cheapest price seems to be on Ebay.

Maillady1
Maillady1 in reply to Eitheror

Thank you for the suggestion! I am gonna order those patches now! I am taking an iron supplement that my doctor prescribed and I have the kind you mentioned that I tried several years ago but maybe I didn’t give it enough time to work. I tried Kratom last night and actually slept for 3 straight hours!! I am hoping for those same results tonight 🤞🏼

Eitheror
Eitheror in reply to Maillady1

Well let me say this, I have very healthy iron stores - around 100. And my male doctor is jealous of my red blood count which is around 13. Yet my brain still seems to crave that nightly dose of ferrous bisglycinate. The patch is good but doesn't provide that immediate punch that the capsules do. For what it's worth, I was ready to give up on the ferrous bisglycinate when I first began. I was taking it in the morning for two weeks and didn't notice any difference in my RLS. Then I read on here to take it at night on an empty stomach and "that has made all the difference." Quoting "The Road Less Travelled."

Eitheror
Eitheror in reply to Eitheror

I mean The Road Not Taken by Robert Frost.

Graham3196
Graham3196 in reply to Eitheror

Healthy iron stores for an RLS person might be 100 but also might be 320. It seems to depend on the ability of your blood-brain barrier to pass ferritin in the amounts that your brain desires. From what some experts say the ferritin level you require has to be high enough to push iron through the blood brain barrier and the difference between one RLS patient and another is the resistance of their blood brain barrier. One person may require 80 and another 300. With oral supplements you can reasonably raise your ferritin from 80 to 100 in a few months but to raise it from 100 to 300 will take take a very long time and you might not ever get there. Practically you might spend more on the supplements than the cost of an iron infusion. But you might do your dough either way because with RLS no-one can offer a guarantee.

Eitheror
Eitheror in reply to Graham3196

It's kind of crazy really because if my ferritin levels had anything to do with it then I should have RLS all day long. What happens at night that causes the RLS to kick in? My ferritin levels remain constant, however, it is my understanding that the more readily available unbound iron in the blood drops at night, probably along with dopamine, for everyone, not just us with RLS. We can't hack that drop whereas the rest of the world can. Within about an hour of taking the ferrous bisglycinate the RLS goes. Longer with the Patch.

LotteM
LotteM in reply to Eitheror

Just FYI, I also ise these iron patches from PatchMD. They ship overseas to EU as well. And they have very very frequently offers of 40% off. I don’t know if that makes it cheaper than the Ebay source.

Eitheror
Eitheror in reply to LotteM

I will definitely check that out. I order 3 to 5 of the 30 patch packages each time so I'm good right now. Thanks for the info!!!

Just know that acid blockers often inhibit digestion of iron and other nutrients. So long term use is problematic.

Hi Graham - I just came across this chain and was wondering on what has happened to you ferritin level since this and if you've had more infusions? Thanks

Graham3196
Graham3196 in reply to YodaDog

Its been a bit disappointing. The improvement I saw after about three months drifted off into the noise of other things. I think I had an improvement and I think it has been sustained BUT it gets hard to tell when its not perfect.

Sometimes it seems I can relax the diet a little bit without consequence but then the RLS comes back and I fell like I have fallen off the boat again. I stress that its what I would call mild at the moment with a few nights of sleep and then a few nights of waking but the severity and period of being awake is much lower now than it used to be.

Hence I have to say that I can't be certain that the iron infusion made a significant difference. That's not to say I regret it. I would still suggest that getting your ferritin up there should be the first action after being diagnosed. I now have learned that increasing the ferritin probably won't help me so I have to pay more attention to the diet and avoid little excursions unless for a special occasion and then I am willing to pay the price. I can do this with confidence that being strict on the diet will fix me up again in 3 or 4 nights.

You do have to be careful on the diet. I found a really tasty gluten free bread. I had several slices per day for about 3 days with no problem then the RLS started to return. I cut out the Bread and the RLS went away again. I was careful to make sure the bread was the only change so I now avoid that brand of bread and try to find some other way to increase variety in my foods.

My ferritin dropped from the immediate post IV level of 340 to about 240 and stabilised at that level.

I should accept the evidence that raising my ferritin wont help me but I now slip back to taking iron biglycinate for a few weeks and then saving the money for a few weeks.

Note that Buchfuhrer and Johns Hopkins say that if your ferritin level drops in the 6 to 12 months after an infusion then your doctor should go looking for a reason for loss of blood. I presume this is based on their experience. Apparently most people who have their ferritin raised find that it stays up forever and if it doesn't they believe they should be able to find a reason.

The doctor who initially arranged my IV said that the science of administering the IV was not accurate enough to give me another IV if my ferritin was already around 250. She said they might get it wrong and find they have raised it to 500. Her opinion is that 500 might be too high for a 75 year old and she doesn't want to risk it since my symptoms are under control with some self control. I accept that decision because she has shown an open mind in the past and I can't argue about my age.

Incidently Dr Buchfuhrer says that there are only three infusion that are suitable for RLS To quote him

"You should also be aware that only certain iron formulations (INFeD and Injectafer) are beneficial for RLS patients. Make sure your doctor understands this point." ( Doctor Buchfuhrer later added Feraheme to this list and explained that it was left out because it is more expensive and in poor supply).

Sorry to make a tome out of the exciting adventures of my ferritin but I thought I should make the story as complete as my memory allows.

Thanks a lot. We eat a particular brand of gluten free bread and sometimes it gives me problems, sometimes it doesn't. I can't work out why though.

Nice to read this. Well done!

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