Feraheme / new acceptable ferritin levels

[tinabuglaw]

FERAHEME: is definitely good/new recommendation on iron ferritin for RLS

Dr. B's response.

On Wed, Jan 22, 2020 at 9:59 PM

<[e-mail]> wrote:

The community of truly good RLS doctors is very small and we all know each other fairly well. MY Dr. *** is an excellent RLS doctor and his advice and recommendations should be as good as any of the rest of us. He has taken over my old job which I did for 15 years, a few years ago as medical editor of the quarterly RLS Foundation’s newsletter, NIghtWalkers (it is good to get new and younger doctors involved with the Foundation).

The reason that Feraheme is not on my list is that it is a relatively newer iron infusion product and has been more expensive than the others. However, it is an excellent product for raising iron in RLS patients. I know have a protocol for using Feraheme but have not used it very much just due to cost and availability locally (it might be more readily available at Yale).

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There are some new issues as to what the correct ferritin level is post infusion. Our original goal was to get the ferritin level just above 200. However, what we would really like to know is the level of iron in the brain (which would take a brain biopsy or at least a spinal tap) so all we can do is use the serum (blood) ferritin level as a surrogate for the levels that might occur in the brain. We have patients who start having RLS symptoms when their serum ferritin levels get below 250. We obviously want to get the ferritin significantly above 300 or even 400 in those patients. We now feel quite comfortable achieving serum ferritin well over 200-300 but we eventually will be able to find out what any individual patient needs by checking a serum ferritin when the patient starts complaining again about worsening RLS symptoms after an infusion (which may take a couple of months to a few years).

I hope that answers your questions.

[Madlegs1]

Thanks, Tina. Very useful.

[Graham3196]

Thanks for posting this. Its really good to have the latest news from such a respected source.

[Parminter]

Thank you, Tina. That's a keeper.

[Hidden]

Will save this for future info . Good to know Dr. B's now recommended ferritin level.