Ferritin increased with oral iron, now what?

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badnights
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Re: Ferritin increased with oral iron, now what?

Post by badnights »

thesleepless1 wrote:A question for the frequent readers of this board, do you remember anyone saying that their RLS improved once they got their ferritin significantly higher than the 100 range (200+)? I've been taking iron for almost 2 years now in the form of either dessicated liver or supplemental iron, and over those 2 years have been able to raise my iron from 80 to 95 (by now it should be over 100 since the last test), and I have noticed absolutely no improvement whatsoever with my PLMD. So I'm now wondering if there's still any hope left for me, if I should keep up the iron.
Since I can't get my ferritin measured whenever I want, I can't say that my improvements are related to a certain ferritin number. But I can say that if I stop taking oral iron, my symptoms will get much worse, and will require more opioid and other medications; if I re-start oral iron, my symptoms will get much better, and I will reduce my medications. I have tried this a number of times with consistent results. The lag is 2-4 weeks before I notice a change, either for better or for worse.

You have a lot of hope for improvement, but it does not lie with oral iron, it lies with IV iron. Your ferritin change of 80 to 95 is not very much, and with 2 years of trying to raise your ferritin by the oral route and still being under 100, you are a prime candidate for IV iron, as Holland has mentioned, and that is what I would pursue if I was in your shoes. Nevertheless, do not stop oral iron, because then you might get worse.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

stjohnh
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Re: Ferritin increased with oral iron, now what?

Post by stjohnh »

badnights wrote:
Fri Sep 04, 2020 5:41 am
...
You have a lot of hope for improvement, but it does not lie with oral iron, it lies with IV iron. ...
Yes, yes, yes.
Blessings,
Holland

thesleepless1
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Re: Ferritin increased with oral iron, now what?

Post by thesleepless1 »

badnights wrote:
Fri Sep 04, 2020 5:41 am


You have a lot of hope for improvement, but it does not lie with oral iron, it lies with IV iron.
We've discussed IV iron before, but my doctor will not prescribe anything due to the possibility of iron toxicity, any ideas on what else to do to get IV iron?

stjohnh
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Re: Ferritin increased with oral iron, now what?

Post by stjohnh »

Well, to meet the guidelines, your ferritin needs to be less than 100. Until it falls to less than 100 it will be even more difficult than usual to get IV Iron. I'd stop the oral iron, wait a few months and recheck the ferritin. At that point, if less than 100 and your transferrin saturation is less than 45%, you would meet guidelines. At that point you can restart trying to persuade your doc that you meet Expert Guidelines, or find a different doctor.
Blessings,
Holland

badnights
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Re: Ferritin increased with oral iron, now what?

Post by badnights »

We've discussed IV iron before, but my doctor will not prescribe anything due to the possibility of iron toxicity, any ideas on what else to do to get IV iron?
If your ferritin really is over 100, maybe what Holland says would work. But your doctor was worrying about iron toxicity when it was still at 80 or 95? You may have come up to a roadblock and need to find a detour. Here is where you have to decide what you're willing to pay to get your life back.

I traveled from northern Canada to southern California to see Dr. Mark Buchfuhrer, the guardian angel (so to speak) of every person who suffers with WED/RLS. He arranged a very expensive infusion for me (expensive because I was time-limited - I could have hung around and gotten a cheaper one, but the hotel bills would have made the price difference irrelevant). And I proceeded to have the most productive winter I've had since 2006. The most energy I've had. The most - - never mind. It's over now, and I can't go back because of covid. I'm looking for alternatives, but if they were easy to find, I'd have found them the first time around.

There is an RLS Quality Care Center at Johns Hopkins in Baltimore, where the method of treating WED/RLS was pioneered. There is Dr. B in Downey (his clinic) and also at Stanford in California who will approve iron infusions for appropriate candidates. There are a few others..... other people will list them, I hope. You might be able to convince your own doctor if you show her/him the 2018 consensus guidelines on treating WED/RLS with iron - - see the link in my signature page and further notes at the end of this post.

I'd love to be able to say that any of the RLS Quality Care Centers (certified by the RLS Foundation: https://www.rls.org/treatment/quality-care-centers) would be able to give you iron infusions if you're a good candidate, but I can't say that - it's still not even close to a mainstream treatment for WED/RLS.

Re the 2018 consensus guidelines (I've attached a highlighted version here with the following highlights):
Print it, and look thru it yourself. Highlight the following sections for your doctor:
  • the 2nd paragraph in section 2.2, beginning "Iron homeostatic mechanisms"
  • the 3rd paragraph in section 2.2, especially the last sentence with the three numbered points (1), (2), and (3)
  • section 2.3 starting with the 3rd sentence, highlight that sentence and the next two
  • section 5.3.4 all except the last sentence
  • section 5.11
  • Figure 5 (note the last box, where repeat infusion is ok for ferritin up to 300, although the initial infusion is not recommended to be given unless ferritin is under 100)
  • section 8.2b
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

thesleepless1
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Re: Ferritin increased with oral iron, now what?

Post by thesleepless1 »

badnights wrote:
Sun Sep 06, 2020 7:51 am
We've discussed IV iron before, but my doctor will not prescribe anything due to the possibility of iron toxicity, any ideas on what else to do to get IV iron?
But your doctor was worrying about iron toxicity when it was still at 80 or 95? You may have come up to a roadblock and need to find a detour.
Hi Badnights, yes, toxicity was the concern. How long did the effects of the IV iron last for you, and at what expense? Now that you know IV iron will work for you, can you get it in Canada? (I'm in Canada also, ON)

badnights
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Re: Ferritin increased with oral iron, now what?

Post by badnights »

Hi Badnights, yes, toxicity was the concern. How long did the effects of the IV iron last for you, and at what expense? Now that you know IV iron will work for you, can you get it in Canada? (I'm in Canada also, ON)
You will have an easier time getting IV iron in Canada than I did because your ferritin is still below 100, or near that. Nevertheless, some doctors - even ones who are familiar with WED/RLS - won't recommend infusions unless your ferritin is below 40.

The benefits of my infusion, which was one infusion of 750 mg ferric carboxymaltose, began 3 weeks after infusion and by one month after, I was able to drop my dose of hydromorph contin from 9 to 6 mg. I maintained that dose until the end of April 2020 but I actually needed it about a month before that. Perhaps my symptoms were exacerbated by overseas travel during a pandemic lol. So the benefits, for me, lasted 6 months.

The cost of the infusion, which was given by an infusion pharmacy who comes to your "house" (airbnb in my case). That is much more expensive than getting it done in a hospital, for which I would have needed a hematologist. Dr. B. could have referred me to a hematologist, but with no guarantee that the hematologist would agree to give the infusion, and limited time available to stay in California, I decided on the other option, which was Dr. B. himself prescribes it, and I do it thru an infusion pharmacy.

The cost when Dr B suggested it was approximately $1000 US but when I contacted them, they had just raised the price for uninsured patients a month prior, now charging them the same as insured patients, so I paid $3000 US, or almost $4000 Cdn. Plus all the airfare and related travel expenses (but I got to meet viewsaskew in person, so that made it all worthwhile!). And the infusion was worth it, too, in my opinion.

I am still working on how to get one in Canada. My doctor suggested checking with naturopaths. She can't recommend me for an infusion because her database of information doens't include the 2018 consensus guidleines, plus I'm outside the guidelines, plus she met a supposed expert who said she never gave RLS/WED patients infusions if their ferritin was over 40 ... sheesh.

Will you try for an infusion? I think you should.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

thesleepless1
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Joined: Sun Jul 17, 2016 10:50 pm

Re: Ferritin increased with oral iron, now what?

Post by thesleepless1 »

badnights wrote:
Wed Sep 09, 2020 4:50 am
Will you try for an infusion? I think you should.
I will defintely do what I can on my next doctors visit, and update this thread if anything comes of it, thanks again for the response.

TimG
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Re: Ferritin increased with oral iron, now what?

Post by TimG »

I am one of those with RLS (mild to moderate) who has benefited from oral iron. My ferritin was 19 when I first started taking an oral iron supplement. It has increased to about 100 and my symptoms have been alleviated to the point where I only take pramipexole 0.125 mg as needed.

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