Rate of Ferritin Decline

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stjohnh
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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
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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
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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
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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
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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
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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)

fuz_mind
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Re: Rate of Ferritin Decline

Postby fuz_mind » Sat Oct 12, 2019 3:09 pm

stjohnh wrote:
fuz_mind wrote:
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.


@stjohnhh - i had my first post iv blood test results back 10 weeks post IV. Obviously I only had 1 500mg dose. frustrated and somewhat angsty with the blood test results. iron saturation is at 45% but the ferritin level was only up to 232. the sleep and symptoms have defn improved post iv iron but getting the occasional creeping back of symptoms last couple of weeks that i have had to increase my ropinirole up. we are going to repeat the blood test in another 8 weeks' time. im honestly speechless on how to even respond to my doc's email. any thoughts?

badnights
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Re: Rate of Ferritin Decline

Postby badnights » Sun Oct 13, 2019 6:48 am

How much ropinirole are you on - are you still at 1.25? What did you increase to? I don't fully know your situation but increasing it seems like a bad idea. You are probably augmenting, since the symptoms spread to your arms (whether creepies or jerking, spread of either thing is probably augmentation). Your doctor should be helping you switch to something else (and giving more IV iron), not making pressure for you to increase the ropinirole.

EDIT
\Regarding your doctors email, and how to respond to it , he is following the guidelines strictly, and you can't really blame him for that. The guidelines are a bit flawed but they're better than the big nothing we had two years ago. Not that that helps you...

I think (unless you find a new doctor) that your approach with this doctor for now should be to focus on educating him about augmentation. Have you given him the augmentation pamphlets that the Foundation makes?
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
Posts: 974
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Rate of Ferritin Decline

Postby stjohnh » Sun Oct 13, 2019 2:36 pm

badnights wrote:...
\Regarding your doctors email, and how to respond to it , he is following the guidelines strictly, and you can't really blame him for that. ...


Beth,
I interpret (as does my hematologist) the guidelines as:
The guidelines say (bottom box of algorithm pg 39): "Consider repeat (note no dosage change) if initial improvement (I.E. 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 had been 2 years for fuz_mind)." He should have given 2 infusions, 1 week apart, 500mg each. So I would say, he is NOT following the guidelines.

Do you interpret the guidelines differently? If so, perhaps an email to one of the consensus statement authors is in order to clarify.

Interestingly, my hematologist, at my last visit, told me that when I need my next IV Iron infusions (presumably in 9-21 months), that I shouldn't bother with the iron panel. He would order 2 more infusions on the basis of my good symptomatic results and my prior iron studies.
Last edited by stjohnh on Sun Oct 13, 2019 2:57 pm, edited 1 time in total.
Blessings,
Holland

stjohnh
Posts: 974
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Rate of Ferritin Decline

Postby stjohnh » Sun Oct 13, 2019 2:48 pm

fuz_mind wrote:...
@stjohnhh - i had my first post iv blood test results back 10 weeks post IV. Obviously I only had 1 500mg dose. frustrated and somewhat angsty with the blood test results. iron saturation is at 45% but the ferritin level was only up to 232. the sleep and symptoms have defn improved post iv iron but getting the occasional creeping back of symptoms...


Actually by the guidelines (as I interpret them, see above post in reply to Beth) you would be recommended for 2 MORE infusions if your next iron panel shows a ferritin less than 300 and your iron saturation is less than 45% (since it will be over 12 weeks since the last infusion).

Perhaps you could send an email to one of the consensus authors and ask for clarification.
Blessings,
Holland

fuz_mind
Posts: 108
Joined: Sun Apr 23, 2017 4:27 pm

Re: Rate of Ferritin Decline

Postby fuz_mind » Sun Oct 13, 2019 3:03 pm

badnights wrote:How much ropinirole are you on - are you still at 1.25? What did you increase to? I don't fully know your situation but increasing it seems like a bad idea. You are probably augmenting, since the symptoms spread to your arms (whether creepies or jerking, spread of either thing is probably augmentation). Your doctor should be helping you switch to something else (and giving more IV iron), not making pressure for you to increase the ropinirole.

EDIT
\Regarding your doctors email, and how to respond to it , he is following the guidelines strictly, and you can't really blame him for that. The guidelines are a bit flawed but they're better than the big nothing we had two years ago. Not that that helps you...

I think (unless you find a new doctor) that your approach with this doctor for now should be to focus on educating him about augmentation. Have you given him the augmentation pamphlets that the Foundation makes?


Beth: this is prob the best doc i can find in my country. he was the only one in the country willing to give me an iv iron in 2016 and 2017. he is willing to listen if i can produce some research and open to discuss unlike the top sleep specialist who dismissed me because she has never ever in her entire career seen a case severe enough to require IV iron..... anyway i;m done with neurologist bashing

i had to up it to 1.25mg about 8 weeks after the IV iron. I was still on 1.0mg before and during my IV iron- and it was only because I was insistent on coming down from 1.5mg that my doc kept pushing up.he was willing to consider a third IV iron only after i sent him the consenus paper again with the highlighted bits suggested by Holland. but he refused to budge on just a single infusion

i do think i was argumenting from time to time but my doc either disagrees or says he doesn;t know.....so in his eyes im this noncompliant patient who cuts medication from time to time......

fuz_mind
Posts: 108
Joined: Sun Apr 23, 2017 4:27 pm

Re: Rate of Ferritin Decline

Postby fuz_mind » Sun Oct 13, 2019 3:06 pm

stjohnh wrote:
fuz_mind wrote:...
@stjohnhh - i had my first post iv blood test results back 10 weeks post IV. Obviously I only had 1 500mg dose. frustrated and somewhat angsty with the blood test results. iron saturation is at 45% but the ferritin level was only up to 232. the sleep and symptoms have defn improved post iv iron but getting the occasional creeping back of symptoms...


Actually by the guidelines (as I interpret them, see above post in reply to Beth) you would be recommended for 2 MORE infusions if your next iron panel shows a ferritin less than 300 and your iron saturation is less than 45% (since it will be over 12 weeks since the last infusion).

Perhaps you could send an email to one of the consensus authors and ask for clarification.


i like the idea of sending an email to one of the consensus authors to clarify - is there any particular one that would be more inclined to reply? or more approachable? I get rather nervous about sending emails to strangers, but I see that it is necessary. any suggestions?

fuz_mind
Posts: 108
Joined: Sun Apr 23, 2017 4:27 pm

Re: Rate of Ferritin Decline

Postby fuz_mind » Sun Oct 13, 2019 3:08 pm

it's interesting that even within the moderators whom I respect have tons more experience and knowledge with the condition - even your own doctors are interpreting the guidelines differently.......

badnights
Moderator
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Rate of Ferritin Decline

Postby badnights » Thu Oct 17, 2019 7:53 am

I need to go back and read things carefully, It's on my to-do list.
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.

fuz_mind
Posts: 108
Joined: Sun Apr 23, 2017 4:27 pm

Re: Rate of Ferritin Decline

Postby fuz_mind » Tue Oct 29, 2019 12:22 pm

badnights wrote:I need to go back and read things carefully, It's on my to-do list.


I "suggested" to my neuro to email one of the authors and he did!

He emailed Dr Richard Allen who reverted very quickly apparently - in a nutshell, in whatever email correspondence they had, my neuro is now convinced that he should have given me 1000 mg (he clarified the guidelines, which is as what stjohn said basically); over and above, all the stuff I have been trying to talk to him about like rate of feritin decline (which he had not taken me seriously previously)

i honestly had a *face palm* moment when my neuro started commenting on all these numbers that I have been trying to tell him in the last 4 years!

anyway my point was to let pple know that the clarification from Dr Allen is as what stjohn had said 1000mg or 2 dose of 500mg over 5-7 days


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