RLS and Iron IV Infusion treatment

[Speedy29]

Suffering from severe RLS. Found research from John Hopkins regarding iron IV infusion. Wondering if anyone else on this forum has had success with this treatment? Would like further details to provide my neurologist at upcoming appointment. Where is the safest facility for this procedure? Will insurance cover this treatment? Thanks for any comments.

[sweetiepye]

I have had two segments of infusions. Each segment is made up of10 infusions, one a week for 10 weeks. It took a half hour in the rapid treatment dept, of the hospital. There was a months rest between segments. There were no side effects , and I didn't notice an improvement until almost to the end of the second set of segments. It reduced my RLS by 70 % I would guess.. Definitely worth doing.I can give you my numbers and the kind of iron they gave me. There are several different kinds , some work better than others for RLS.It is an easy process with nothing to fear.The iron bypasses the stomach and works faster.Let me know if you want more information. Pam

[Speedy29 in reply to sweetiepye]

Thank you for those encouraging words. Yes, the numbers and the kind of iron they gave you would be most helpful. I'm just beginning to learn the jargon, the numbers, understanding the process. It makes sense that the iron to the brain ratio is so different from simply taking an iron supplement.

[sweetiepye in reply to Speedy29]

The preferred iron for infusion is: 1gm low molecular weight iron dextiron (InF e D,

1 gm feraheme / ferumoxytol, or 1 gm ferric carboxymaltose (not iron sucrose)

My iron was 100 last Aug. Last week my value was 488 ng/mL

Most GP will think this is to high, but if you read iron levels on RLS.org you'll find information that's current on treatment of RLS. My doctor also suggested eating a diet high in iron to keep levels high.

[Speedy29 in reply to sweetiepye]

This is helpful information. Researching anti-inflammatory foods and high iron foods, as well. Thank you for helping.

[sweetiepye in reply to Speedy29]

You are welcome, good luck !

[Graham3196 in reply to sweetiepye]

I had a problem finding someone to give me an iron infusion because I wasn't anemic and iron is not recognised as a treatment for RLS in Australia.

Would you mind telling who prescribed it and who performed it?

[sweetiepye in reply to Graham3196]

I see Dr. Berkowski out of the University of Michigan. The infusion is given by the hospital staff . I was anemic , but even if you aren't you may still need higher amounts in your brain .

[Jameskbt]

Personally , i 100% feel it works. I am given 1g infusion every 12 weeks. They began because i couldnt keep the 322mg iron tablets down.

The iron infusion plus 2 x 250mg magnesium tablets every morning seem to have reduced my episodes by as much as 90% thank god.

Also no caffeine after 3pm has been really important too.

Im sure i have read there is medical evidence of the effectiveness of iron levels being a factor in RLS episodes.

[LotteM]

I am in the Netherlands and have been given one Ferinject/Injectafer/iron carboxymaltose dose of 1g in one go over two months ago. No obvious improvements yet. And my blood has been drawn yesterday to assess ferritin status. Shall update when I have the results.

Here is the review and advisory paper from the International RLS study group IRLSSG on iron for RLS:

ncbi.nlm.nih.gov/m/pubmed/2...

It 'works' for about half of the patients treated. 'Works' may mean that most symptoms get resolved, but also that there is a small reduction in symptoms.

[DicCarlson]

My severe RLS responded dramatically to oral iron supplementation - Ferrous Bisglycinate Chelate - cost is $5 US! albionferrochel.com/

[Graham3196 in reply to DicCarlson]

Glad to hear that. Do you know what your ferritin level was before the oral treatment and what it is now?

Different people need different levels of ferritin in their blood. Possibly to push the iron through the blood-brain barrier. So some are cured by raising their iron from a low level to 50 or so and this amount of increase is possible with oral supplements. If your threshold is 350 you will never get there by swallowing oral iron.

So you should get a ferritin test done as soon as you are diagnosed as having RLS. If your ferritin is low enough to be declared anemic then you need an iron infusion just to stay healthy and this might fix your RLS. Unfortunately the ferritin level for anemia seems to be not well agreed, there must be a really official number somewhere but it seems to vary around the world and perhaps even which part of which country you are in.

If your ferritin is around 100 or even 200 and you still have RLS and no other condition that rules out an IV iron infusion then you should get one as soon as you can. It can be argued that perhaps oral supplements will get you high enough but why wait for 6 months and then perhaps discover that you are never going to get above 200? It seems to me that you should get an iv infusion so that you know in a couple of months whether your problem is fixed by just going above some ferritin level and you get back to enjoying a healthy life. (lucky one)

The upper level is not well defined. I had doctors who told me they would not be worried if my ferritin level was 1000 but they didn't want to be the doctor who raised it that high. There seems to be some sort of agreement that 350 is very safe and the decision to raise it there is completely defensible.

After the infusion mine was 343 and 3 months later it had dropped to 280 or so. My cooperative doctor said the process was not predictable enough to try to raise it back to 350 and in an older person such as me she would be a bit worried in case they raised it to 700 or so by mistake. I accepted her advice. I will get another ferritin measurement in about 3 months time. Note that Doctor Buchfuhrer says that the Doctors at Johns Hopkins said that if a patient's ferritin level dropped quickly after an iron infusion (perhaps 6 months) then they would start to look at where the patient might be losing blood internally. Not a happy thought.

[Speedy29 in reply to Graham3196]

All of this information is very informative. So much to learn. Thank you

[DicCarlson in reply to Graham3196]

My Ferretin level was 49 with raging RLS - docs said it was OK. It was the information on the Johns Hopkins Neurology website that got me pointed to the iron. I actually started with Blackstrap Molasses (it is a source of iron) and it "cut into" the RLS. I found the Ferrous Bisglycinate (18mg) and took it daily mid-morning. I continued this for a few months then went to every other day, then 2X week, then none. I haven't taken any in more than a year now.

I'm still troubled with insomnia and some mild RLS on occasion - but nothing like before. My real question is why was I iron deficient in the first place, and why not now?

[Hidden in reply to DicCarlson]

I also had very troublesome RLS and went to Ferrous Bisglycinate (oral) on the advice of my very good internist. He said "Let's start there." First did morning and early evening. It worked fine but had to deal with constipation, which I did. But the RLS went to zero. In a few months, I stopped the evening iron, with only a slight creeping back of the RLS. So now I take the morning iron, and .25 mg of ropinirole about 6 pm. Take magnesium citrate for the constipation, and the RLS is completely under control. I still have some insomnia, but it's unrelated and am OK with it.

[Speedy29 in reply to Hidden]

That is encouraging news. I'll share this with the neurologist this week. Thank you.

[tacomvti]

My husband had good results by the 2nd infusion---total of. 6---reduced his rls to

just nighttime now which 1 ropinirole tablet keeps under control.

[Graham3196 in reply to tacomvti]

Well done. Its always encouraging to hear of a success story. Can you tell us what his ferritin level has gone up to?

[Svengolly]

I had raging rls .

After Two 100mg venifer infusions at gastro drs. Clinic .in Ohio usa

(1 per week) ... totally gone ! 😊

I was anemic so did total six ..

my ferritin went from 7 to 110 .

Year later still no rls.

[Shumbah]

My daughter has had terrific result from iron infusion for her RSL it did not help me .

In Australia you can get iron infusion from health clinics , Natropaths no need to see a specialist

[marsha2306]

Dr. Earley at Hopkins is my doc and when he tested my ferritin at 70 he had me go for an iron infusion. It worked a little after about 6 weeks even though it raised my ferritin to 650. The effect lasted a few months. But not all people react the same. It’s possible that low ferritin isn’t the direct cause of my RLS.

[Speedy29]

These comments are hopeful. I'll reply back after this Friday when seeing the neurologist and a "plan".