Rate of Ferritin Decline

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stjohnh
Posts: 914
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Rate of Ferritin Decline

Postby stjohnh » Sun Aug 04, 2019 10:20 pm

fuz_mind wrote:
stjohnh wrote:
fuz_mind wrote:

Hmmm, your recent IV was lower dose than recommended. Any chance you can get another 500mg IV asap? You have a better chance of responding.


my doc was concerned that 1000mg was too much and he had told me that he wouldn't give me 500mg on 2 occasions. I'm not sure how much of it is guided by the concern that my ferritin levels is > 100. is there a paper that you would recommend that i can show him?


Figure 5 on page 39 of the IRLSSG Consensus paper https://www.sciencedirect.com/science/article/pii/S1389945717315599?via%3Dihub is the algorithm for IV Iron. The grey box at the bottom is the one for repeat infusions. Basically, yes (at same dose as initial) if Ferritin<300 and TSat%<45%.

Note that your pre-IV iron panel showed levels more compatible with "initial treatment" than with "recurrent" treatment. For example, my recent second set of Injectafer infusions were the result of my recurrent symptoms, with a ferritin of 280. I got the full dose, 2 infusions, 750mg each, a week apart.
Blessings,
Holland

fuz_mind
Posts: 98
Joined: Sun Apr 23, 2017 4:27 pm

Re: Rate of Ferritin Decline

Postby fuz_mind » Mon Aug 05, 2019 2:47 am

stjohnh wrote:
fuz_mind wrote:
stjohnh wrote:


my doc was concerned that 1000mg was too much and he had told me that he wouldn't give me 500mg on 2 occasions. I'm not sure how much of it is guided by the concern that my ferritin levels is > 100. is there a paper that you would recommend that i can show him?


Figure 5 on page 39 of the IRLSSG Consensus paper https://www.sciencedirect.com/science/article/pii/S1389945717315599?via%3Dihub is the algorithm for IV Iron. The grey box at the bottom is the one for repeat infusions. Basically, yes (at same dose as initial) if Ferritin<300 and TSat%<45%.

Note that your pre-IV iron panel showed levels more compatible with "initial treatment" than with "recurrent" treatment. For example, my recent second set of Injectafer infusions were the result of my recurrent symptoms, with a ferritin of 280. I got the full dose, 2 infusions, 750mg each, a week apart.


thanks for the advice! but I'm also wondering if "pre-IV iron panel showed levels more compatible with "initial treatment" than with "recurrent" treatment" is a concept that will make sense to my doc. biologically speaking, how does it work?

fuz_mind
Posts: 98
Joined: Sun Apr 23, 2017 4:27 pm

Re: Rate of Ferritin Decline

Postby fuz_mind » Mon Aug 05, 2019 11:21 am

do u see any difference when u have 1 vs 2 infusions?

fuz_mind
Posts: 98
Joined: Sun Apr 23, 2017 4:27 pm

Re: Rate of Ferritin Decline

Postby fuz_mind » Thu Aug 08, 2019 4:17 pm

''
stjohnh wrote:
fuz_mind wrote:
stjohnh wrote:


my doc was concerned that 1000mg was too much and he had told me that he wouldn't give me 500mg on 2 occasions. I'm not sure how much of it is guided by the concern that my ferritin levels is > 100. is there a paper that you would recommend that i can show him?


Figure 5 on page 39 of the IRLSSG Consensus paper https://www.sciencedirect.com/science/article/pii/S1389945717315599?via%3Dihub is the algorithm for IV Iron. The grey box at the bo'ttom is the one for repeat infusions. Basically, yes (at same dose as initial) if Ferritin<300 and TSat%<45%.

Note that your pre-IV iron panel showed levels more compatible with "initial treatment" than with "recurrent" treatment. For example, my recent second set of Injectafer infusions were the result of my recurrent symptoms, with a ferritin of 280. I got the full dose, 2 infusions, 750mg each, a week apart.


This is the reply from my doc

"My understanding of the guideline is different. The decision to give IV Iron initially is still ferritin 100 mg or below as there is insufficient data for 100-300 mg of ferritin. However, if you show improvement with IV Iron initially, and later deteriorate, despite ferritin > 100 but < 300 , may consider additional dose of IV Iron after 6 - 12 weeks."

stjohnh
Posts: 914
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Rate of Ferritin Decline

Postby stjohnh » Thu Aug 08, 2019 8:21 pm

fuz_mind wrote:
This is the reply from my doc

"My understanding of the guideline is different. The decision to give IV Iron initially is still ferritin 100 mg or below as there is insufficient data for 100-300 mg of ferritin. However, if you show improvement with IV Iron initially, and later deteriorate, despite ferritin > 100 but < 300 , may consider additional dose of IV Iron after 6 - 12 weeks."


Your doc is correct except for the last phrase: The guidelines say: Consider repeat (note no dosage change) if initial improvement (IE you got better from the IV Iron you had 2 years ago), and ferritin<300, and more than 12 weeks has passed since the initial IV infusion (it has been 2 years for you). He should have given you 2 infusions, 1 week apart, 500mg each.

I had no problem getting repeat IV infusion (750mg each, 1 week apart) from my hematologist. I was 22 weeks from my initial infusion, had a good initial response, symptoms were returning and my ferritin had dropped from 700 post initial set of 2 infusions to 260 pre-second set of 2 infusions.
Blessings,
Holland

fuz_mind
Posts: 98
Joined: Sun Apr 23, 2017 4:27 pm

Re: Rate of Ferritin Decline

Postby fuz_mind » Fri Aug 09, 2019 12:37 am

stjohnh wrote:
fuz_mind wrote:
This is the reply from my doc

"My understanding of the guideline is different. The decision to give IV Iron initially is still ferritin 100 mg or below as there is insufficient data for 100-300 mg of ferritin. However, if you show improvement with IV Iron initially, and later deteriorate, despite ferritin > 100 but < 300 , may consider additional dose of IV Iron after 6 - 12 weeks."


Your doc is correct except for the last phrase: The guidelines say: Consider repeat (note no dosage change) if initial improvement (IE you got better from the IV Iron you had 2 years ago), and ferritin<300, and more than 12 weeks has passed since the initial IV infusion (it has been 2 years for you). He should have given you 2 infusions, 1 week apart, 500mg each.

I had no problem getting repeat IV infusion (750mg each, 1 week apart) from my hematologist. I was 22 weeks from my initial infusion, had a good initial response, symptoms were returning and my ferritin had dropped from 700 post initial set of 2 infusions to 260 pre-second set of 2 infusions.




unfortuately he was very fixtated that my ferritin is > 100 (even though 110 vs 114 makes no difference to me honestly)


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