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Rate of Ferritin Decline

Posted: Tue Apr 25, 2017 6:37 am
by fuz_mind
Hi all

I'm wondering if anyone has any information on what is considered a "normal" rate of ferritin decline?

There's a study that I have read that suggests that the slower the rate of ferritin decline the more prolonged the symptom improvements, and I have also read that on average, patients need a repeat infusion every 18 months. Is this the general experience for those who have done IV iron?

I'm asking because I am rather concerned about my ferritin levels dropping rather quickly. I did a 1000mg IV iron last year early April and managed to get the ferritin up from 30 to about 310 (June 2016) . But my blood test in Jan 2017 showed that it is down to 180. Or is this normal and I'm just overreacting to the numbers? My neurologist seem to think that I'm overly worried......

Thanks for any advice!

Re: Rate of Ferritin Decline

Posted: Tue Apr 25, 2017 10:51 am
by badnights
Your neurologist needs to read up more on WED/RLS. Did your symptoms improve after the infusion? Are they returning now?

WED/RLS patients dump iron from our tissues. We don't seem to be able to store enough of it. Unlike people with iron deficiency anemia, who can get one infusion and are "cured" of their low iron, we need to keep taking iron in order to keep our ferritin levels up. Otherwise they steadily drop. Only in our disease does this happen.

Whether you need another infusion would depend on your answers to the two questions above, among other things (that I know nothing about because I'm not a doctor). But if you saw improvement after the infusion and your symptoms are now getting worse again, they might tie in tightly with your ferritin levels and so your target ferritin level would be higher than 180.

Re: Rate of Ferritin Decline

Posted: Tue Apr 25, 2017 9:33 pm
by ViewsAskew
The research at Johns Hopkins seems to indicate that the levels fall less quickly with each infusion, but the first 1-3 tend to fall relatively fast. Some people need at least 5 before it stays stable for a reasonable length of time.

I was down to 175 within 12 weeks of my first infusion, and under 100 in about 8 months. I just had my third and hopefully it will last longer.

Re: Rate of Ferritin Decline

Posted: Fri May 19, 2017 3:26 pm
by fuz_mind
thanks for sharing viewsaskew & badnights!

it took forever for the neurologist to be convinced that i needed iv iron because it's not a typical procedure done in my country..... he had to check if the hosptial even offered the treatment.....

viewsakew: hope the iv iron works and last longer for you :)

Re: Rate of Ferritin Decline

Posted: Fri May 19, 2017 3:32 pm
by yawny
Ann & Beth,
Are the specifics of the right kind of iron infusion listed anywhere on the discussion board? Another member mentioned that a recent webinar talked about this.

Re: Rate of Ferritin Decline

Posted: Fri May 19, 2017 7:04 pm
by ViewsAskew
I do not know if there are listed anywhere, yawny. It is still somewhat controversial. Not sure if I am sharing what I shouldn't....

TO ALL READING, I am NOT a doctor! This is what happened with me and I believe it came from Dr. Earley's protocol originally.

A full iron panel (early morning and fast; no iron supplements 48 hours prior) should to done 6, 12 and 18 weeks after the infusion to establish the iron levels achieved and whether the levels stay up, decrease, and at what level they need to be to help.

Use iron dextran (INFeD) 1000 mg in 500 ml of normal saline. Start infusion, over 2 minute, a 13 ml (26 mg) test dose of iron dextran and wait 15 minutes. If no allergic reaction then infuse the remaining 487 ml of iron dextran over 60 minutes. Check BP at start and every 15 minutes. The infusion folks know what to do about that.

When to give the next dose of iron is more complicated. They try to maximize the iron level (ferritin 250-300); If symptoms improve - great, it helped - doc follows patient and keeps track regularly of what happens. When symptoms worsen, repeat the iron panel and if the ferritin has dropped significantly, then give another iron infusion (possibly 500 mg of iron for the repeat infusion, possibly more depending on how low it dropped). When symptoms come back, the doc can identify the minimum level that THIS patient needs. I, for example, need around 200 or more for any impact.

Re: Rate of Ferritin Decline

Posted: Sat May 20, 2017 3:41 pm
by legsbestill
When I contacted Dr. Buchfuhrer last year, he volunteered to let me have the protocol he uses for infusions if I was going for one. My iron levels rose with oral iron so I never asked him for it but it might be worth getting in touch with him.

Re: Rate of Ferritin Decline

Posted: Sun May 21, 2017 5:01 am
by badnights
I can't really add anything to what Ann has said.

Re: Rate of Ferritin Decline

Posted: Tue May 23, 2017 3:17 am
by TimG
I have never had an IV iron infusion. My experience has been that daily iron supplements ( 325 mg ferrous sulfate) have sufficed to raise and sustain my ferritin level high enough to keep RLS symptoms minimized most nights. On those nights when symptoms are increased I take 0.125 mg of pramipexole.
My ferritin level when I began oral iron supplementation several years ago was 19. It has been as high as 90 and currently is a little over 50.

Re: Rate of Ferritin Decline

Posted: Wed May 31, 2017 6:07 am
by fuz_mind
legsbestill wrote:When I contacted Dr. Buchfuhrer last year, he volunteered to let me have the protocol he uses for infusions if I was going for one. My iron levels rose with oral iron so I never asked him for it but it might be worth getting in touch with him.




does anyone have Dr Buchfuhrer's protocol for infusions?

Re: Rate of Ferritin Decline

Posted: Wed May 31, 2017 7:40 am
by ViewsAskew
I posted Earley's - Dr. B uses the same one. Or did...

Re: Rate of Ferritin Decline

Posted: Wed May 31, 2017 4:18 pm
by yawny
IRON INFUSIONS...I haven't seen it myself, but heard from another member here that the recent webinar "What is RLS?" with Dr William Ondo, recorded May 17, 2017, discusses different types of infusions.

https://rls.org/member-portal/webinars

Re: Rate of Ferritin Decline

Posted: Fri Jun 16, 2017 4:02 pm
by peanut1
I'm hoping to get my first transfusion this year. Have an appointment schedule (on the books) with William Ondo in September. It would be interesting to see if people were semi cured with the transfusions coupled with a good diet. With that said, I realize there are some here where diet does not impact their RLS.

Re: Rate of Ferritin Decline

Posted: Fri Jun 16, 2017 4:55 pm
by fuz_mind
peanut1 wrote:I'm hoping to get my first transfusion this year. Have an appointment schedule (on the books) with William Ondo in September. It would be interesting to see if people were semi cured with the transfusions coupled with a good diet. With that said, I realize there are some here where diet does not impact their RLS.


i hope the iv works for you!

Re: Rate of Ferritin Decline

Posted: Sat Jun 17, 2017 6:55 pm
by peanut1
Thank you! I have a lot of hope for managing these symptoms better IF I can get the transfusion.