RLS, iron infusions, and ferritin levels.

[ViewsAskew]

that makes me feel a lot better. Although I’m in the east coast, I can fly out west easy enough (when everything calms down). Thank you for sharing.

I wonder how dr. Earley feels about this treatment... anyone ask him about it?

He developed it. . Well, a few docs at Johns Hopkins, but if you search on RLS, serum ferritin and infusion, papers by Earley will pop up. You are in good hands.

[Frunobulax]

What hoops did you have to go through or others in order to get the hematologist comfortable enough to do it?

I printed the study from the RLS study group, highlighted the relevant section and went to my neurologist. He said that he can't do it, but sent me to a GP whom he knew who does iron infusions. So it was fairly easy for me. It wasn't covered by insurance though.

In my experience it pays to find an open-minded doctor in the vicinity. This may not be easy (I visited several other neurologists before finding the current one), but it's worth the effort. My neurologist doesn't do everything I suggest either, but he'll give it some thought and explain thoroughly why he doesn't agree with someting.

[Oozz]

What hoops did you have to go through or others in order to get the hematologist comfortable enough to do it?

I printed the study from the RLS study group, highlighted the relevant section and went to my neurologist. He said that he can't do it, but sent me to a GP whom he knew who does iron infusions. So it was fairly easy for me. It wasn't covered by insurance though.

In my experience it pays to find an open-minded doctor in the vicinity. This may not be easy (I visited several other neurologists before finding the current one), but it's worth the effort. My neurologist doesn't do everything I suggest either, but he'll give it some thought and explain thoroughly why he doesn't agree with someting.

And, you did not get a lot of relief from the infusion? What was your Ferratin at the time?

[Frunobulax]

And, you did not get a lot of relief from the infusion? What was your Ferratin at the time?

Alas, it didn't do anything for me. Ferritin was 200-ish before the IV. Transferrin% something like 35% I think.
But I've been taking oral iron for a long time, so maybe there was no deficiency in my case. But it was worth a try.

Actually my RLS got better as ferritin got lower. 2 years ago my ferritin was ~250 and I had more severe symptoms than before the IV with a ~180 ferritin. But we know that ferritin can go up with inflammation, so it's best not to look too closely at ferritin.

[badnights]

have you gotten your ferritin checked again or had a second infusion? I was told by someone that the subsequent infusions usually last quite a bit longer.

I was due to get it checked again in late March. I was in isolation after international travel, though, and now it seems too risky to be going somewhere I don't absolutely need to go. I don't think I would even be allowed to go to the lab to get it done, but I haven't checked. It's pointless anyway, since I can't get an infusion here and I can't travel.

But yes, now is when Dr B said I should get it checked again . Last time was November, after the first burst of benefit had worn off.

I have to ask, if it’s so rare, how come you and several others on the board were able to get it done despite having 200+ ferritin?

I flew from northern Canada to California to see Dr B. My ferritin was 380ish when I got the infusion, but I have chronic inflammation from various muscle injuries that I keep re-aggravating, so my ferritin is almost irrelevant. But I needed to fly 2500 miles to someone who could make it happen, and pay thousands of dollars to get it done within the time window I had.

[stjohnh]

And, you did not get a lot of relief from the infusion? What was your Ferratin at the time?

The statistics show about 1/2 of RLS patients that get IV iron infusions have NO benefit (but for those that do improve, they usually improve a lot). The reason is unknown, but best guess is that the reason for RLS low brain iron occurring is that the iron pump mechanism of the blood brain barrier is defective in RLS patients. This is almost certainly due to some combination of the approximately 20 genes that have been associated with RLS. Some combinations of genes result in mild defects in the iron transport mechanism, those are the people who improve. Some combinations of genes result in very defective iron transport, so much so that the high blood iron levels achieved by IV iron cannot overcome the iron transport defects. Hopefully before long there will be a blood test that can identify which RLS patients will benefit from IV Iron and which will not.

[badnights]

Another thought on why some people don't benefit - -Jim Connor said today in the webinar (and last Sept at the symposium) that they think iron from the infused molecules is taken up by marcophages and converted to ferritin; only ferritin and not any of the infused iron molecules moves across the bbb epithelial cells into the CSF in their experiments. [They tested ferric carboxlymatose, the sucrose, all the common infused iron molecules. Their experimental setup was a container of the iron molecule they were testing (in whatever kind of blood substitute); and the container had a microporous membrane as its bottom and a layer of epithelial cells across the bottom (with tight junctions, proper replica of bbb). The container was placed in a larger container of CSF from WED/RLS patients or controls.]

So none of the iron molecules move into the brain yet some patients still benefit from them, why? they hypothesize that the answer is that macrophages take up the iron molecules, and either in the macrophages or in the epithelial cells (I missed something here), the iron molecules are taken apart and the iron is taken up by ferritin, which is moved across the CSF-side cell wall of the epithelial cell and into the CSF.

All that to say, maybe some of those genes encode for a part of the process involving macrophages or transfer of iron from the infused molecules to ferritin. And people with macrophage-process genes messed up don't benefit from infusions because the iron can't even get to the bbb. People with bbb Fe-transport genes messed up do benefit because they get inundated with iron which lets their feeble transport systems move more iron across.

Or, like you said, people who don't benefit have a very badly messed up iron transport system and even inundating it wtih Fe can't help.

[QyX]

Or, like you said, people who don't benefit have a very badly messed up iron transport system and even inundating it wtih Fe can't help.

Uff, when this is really the situation in some patients, then I can see this being a massive issue for some. At least my RLS is slowly but constantly progressing over the years and recently only with the addition of iron tablets I was able to keep my symptoms at a low, well managed level.

Without those iron tablets, my situation would be much worse. I feel like that this is disorder, especially in severe cases, is underestimated. There is no doubt it can cause severe disability, chronic social isolation with depression & anxiety up to a point where you are as functioning as someone with serious chronic fatigue syndrome. But since most cases seem to be mild and easy to treat, doctors feel like you are from a different planet or crazy when you tell them you need opioids for RLS.

[Frunobulax]

Or, like you said, people who don't benefit have a very badly messed up iron transport system and even inundating it wtih Fe can't help.

Uff, when this is really the situation in some patients, then I can see this being a massive issue for some. At least my RLS is slowly but constantly progressing over the years and recently only with the addition of iron tablets I was able to keep my symptoms at a low, well managed level.

Possibly. I don't benefit from iron, and ME/CFS counts as "badly messed up". Yet my RLS has been improving over the years, which I attribute to my diet.

[badnights]

I feel like that this is disorder, especially in severe cases, is underestimated. There is no doubt it can cause severe disability, chronic social isolation with depression & anxiety .... But since most cases seem to be mild and easy to treat, doctors feel like you are from a different planet or crazy when you tell them you need opioids for RLS.

This is exactly true. If we discuss actual sleep loss, there is only one disease that causes greater sleep loss than severe WED/RLS, and that one is invariably fatal. (from a paper by Richard Allen, iirc) (it's called fatal familial insomnia). I wish more doctors understood that.