Rate of Ferritin Decline

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

Re: Rate of Ferritin Decline

Postby fuz_mind » Tue Jul 16, 2019 3:49 pm

back to square 1 with symptoms flaring

ferritin down to 114; iron saturation 20%

same conversation with my neuro about my ferritin >100 even though i pointed out that I couldnt have predicted my blood test results

no Iv iron again; ropinirole is at the highest of 1.5mg dose

i give up on iron treatment . this is a hopeless battle

i reallly wonder if i need to physically collapse before the docs will do anything

stjohnh
Posts: 976
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Rate of Ferritin Decline

Postby stjohnh » Tue Jul 16, 2019 7:53 pm

fuz_mind wrote:back to square 1 with symptoms flaring

ferritin down to 114; iron saturation 20%

same conversation with my neuro about my ferritin >100 even though i pointed out that I couldnt have predicted my blood test results

no Iv iron again; ropinirole is at the highest of 1.5mg dose

i give up on iron treatment . this is a hopeless battle

i reallly wonder if i need to physically collapse before the docs will do anything


Fuz, I was looking back on your posts from 2017 on IV Iron. Since then an important paper was published by the International Restless Legs Syndrome Study Group. This is important because many doctors will pay attention to the recommendations of a group like this. The important point for you is, that while INITIAL IV Iron infusions are limited to those with a ferritin below 100, SUBSEQUENT infusions are ok if the ferritin is less than 300 and the transferrin sat less than 45. Looks to me like you qualify. Print a copy and highlight the sections on repeat infusions. Maybe that will help. Here is a link to the recommendations:
https://www.sciencedirect.com/science/article/pii/S1389945717315599?via%3Dihub
Blessings,
Holland

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

Re: Rate of Ferritin Decline

Postby fuz_mind » Thu Jul 18, 2019 1:58 pm

stjohnh wrote:
fuz_mind wrote:back to square 1 with symptoms flaring

ferritin down to 114; iron saturation 20%

same conversation with my neuro about my ferritin >100 even though i pointed out that I couldnt have predicted my blood test results

no Iv iron again; ropinirole is at the highest of 1.5mg dose

i give up on iron treatment . this is a hopeless battle

i reallly wonder if i need to physically collapse before the docs will do anything


Fuz, I was looking back on your posts from 2017 on IV Iron. Since then an important paper was published by the International Restless Legs Syndrome Study Group. This is important because many doctors will pay attention to the recommendations of a group like this. The important point for you is, that while INITIAL IV Iron infusions are limited to those with a ferritin below 100, SUBSEQUENT infusions are ok if the ferritin is less than 300 and the transferrin sat less than 45. Looks to me like you qualify. Print a copy and highlight the sections on repeat infusions. Maybe that will help. Here is a link to the recommendations:
https://www.sciencedirect.com/science/article/pii/S1389945717315599?via%3Dihub



Hi stjohn

thanks for the suggestion. have read and re-read that paper, sent it to my doc etc since it was published in 2018.

it's a hopeless battle. even if i physically collapse, im not sure if i will get any medical treatment.....

stjohnh
Posts: 976
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Rate of Ferritin Decline

Postby stjohnh » Thu Jul 18, 2019 3:22 pm

Sending a copy of an article to a doctor is not the best way to get the doctor's attention. Much better for you to take a copy of the article when you go for an appointment, with the section of the algorithm on repeat IV iron highlighted. That is the last grey box on page 39. Point out that the algorithm suggests repeat IV Iron if ferritin < 300 and TSat% < 45.

When you mail an article to a doctor, the doctor usually just puts it in a pile and doesn't look at it. When you are in the room, handing a paper copy to the doctor with a single question, the doctor is much more likely to address that question.

From the sound of your description, the doctor hasn't got it figured out that the requirements for repeat iron infusion are different from initial infusion. Hopefully you can correct that problem.
Blessings,
Holland

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

Re: Rate of Ferritin Decline

Postby fuz_mind » Thu Jul 18, 2019 7:50 pm

stjohnh wrote:Sending a copy of an article to a doctor is not the best way to get the doctor's attention. Much better for you to take a copy of the article when you go for an appointment, with the section of the algorithm on repeat IV iron highlighted. That is the last grey box on page 39. Point out that the algorithm suggests repeat IV Iron if ferritin < 300 and TSat% < 45.

When you mail an article to a doctor, the doctor usually just puts it in a pile and doesn't look at it. When you are in the room, handing a paper copy to the doctor with a single question, the doctor is much more likely to address that question.

From the sound of your description, the doctor hasn't got it figured out that the requirements for repeat iron infusion are different from initial infusion. Hopefully you can correct that problem.



i have emailed him. giving him a copy of the blue book. brought papers in for him during the appointments. brought a list of questions and went through it with him.

im not sure if it's him who hasnt figured it out or the neurologists in the country who hasn't - to be fair he tried.

im apparently the first person to ever receive iv iron for rls......and the sleep specialist in my country that i went for a 3rd opinion - within 5 min of the consultation asked me if i have any psychiatric problems because 1) she has never ever seen such a severe case of rls in her entire career 2) she has never have had to give anyone in her entire career an iv iron. so apparently all my pain is exagerated

i give up.

the only comfort i find is this forum; that my experiences aren't weird and there's a plausible explaination for it; and the latest research articles online

stjohn: rem the question i asked on another thread if it was common for one to have no pain but unable to sleep? i had to ask it on this forum because when i asked my doctor. his response was "medical school didn't teach us this"

totally hopeless. the frustrating bit is knowing that the treatment has worked before and not being able to get it.


i shall just lurk on the boards and not further spread my negativity and hopelessness around.

stjohnh
Posts: 976
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Rate of Ferritin Decline

Postby stjohnh » Thu Jul 18, 2019 9:32 pm

fuz_mind wrote:...
im apparently the first person to ever receive iv iron for rls......and the sleep specialist in my country ...

i give up...


Any possibility of going to another country to get treated?
Blessings,
Holland

Frunobulax
Posts: 200
Joined: Mon Jun 02, 2014 7:41 pm

Re: Rate of Ferritin Decline

Postby Frunobulax » Thu Jul 18, 2019 9:50 pm

fuz_mind wrote:
stjohnh wrote:Sending a copy of an article to a doctor is not the best way to get the doctor's attention. Much better for you to take a copy of the article when you go for an appointment, with the section of the algorithm on repeat IV iron highlighted.


i have emailed him. giving him a copy of the blue book. brought papers in for him during the appointments. brought a list of questions and went through it with him.
[...]
im apparently the first person to ever receive iv iron for rls......and the sleep specialist in my country that i went for a 3rd opinion - within 5 min of the consultation asked me if i have any psychiatric problems because 1) she has never ever seen such a severe case of rls in her entire career 2) she has never have had to give anyone in her entire career an iv iron. so apparently all my pain is exagerated


Sounds familiar. I have accepted the fact that 50% of all doctors are simply ignorant idiots and another 30% may not be idiots but can't be persuaded. Just try other doctors, eventually you'll find one who can help you. I had a pleasent surprise last week when I got a recommendation for a GP who does iron infusion, and 72h later my infusion was done.

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

Re: Rate of Ferritin Decline

Postby fuz_mind » Fri Aug 02, 2019 6:27 pm

some gd news to share

i got my iv iron eventually. but it took another fall for it to happen (i'm particularly clumsy when sleep deprived)

im hoping that my symptoms get better soon....

stjohnh
Posts: 976
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Rate of Ferritin Decline

Postby stjohnh » Fri Aug 02, 2019 6:59 pm

fuz_mind wrote:some gd news to share

i got my iv iron eventually. but it took another fall for it to happen (i'm particularly clumsy when sleep deprived)

im hoping that my symptoms get better soon....


Can you give details? ferric carboxymaltose (Injectafer) or some other type of IV Iron? How many mg dose? How many infusions and what dates?
Blessings,
Holland

ViewsAskew
Moderator
Posts: 15795
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Rate of Ferritin Decline

Postby ViewsAskew » Fri Aug 02, 2019 7:59 pm

fuz_mind wrote:some gd news to share

i got my iv iron eventually. but it took another fall for it to happen (i'm particularly clumsy when sleep deprived)

im hoping that my symptoms get better soon....


So sorry about the fall! But, glad they did it!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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

Re: Rate of Ferritin Decline

Postby fuz_mind » Sat Aug 03, 2019 2:13 pm

ViewsAskew wrote:
fuz_mind wrote:some gd news to share

i got my iv iron eventually. but it took another fall for it to happen (i'm particularly clumsy when sleep deprived)

im hoping that my symptoms get better soon....


So sorry about the fall! But, glad they did it!


the fall was ok, not the first time or most serious. i'm glad that they gave it to me too:)

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

Re: Rate of Ferritin Decline

Postby fuz_mind » Sat Aug 03, 2019 2:18 pm

stjohnh wrote:
fuz_mind wrote:some gd news to share

i got my iv iron eventually. but it took another fall for it to happen (i'm particularly clumsy when sleep deprived)

im hoping that my symptoms get better soon....


Can you give details? ferric carboxymaltose (Injectafer) or some other type of IV Iron? How many mg dose? How many infusions and what dates?



500 mg IV ferric carboxymaltose over an hour. 1 infusion only on 29.7.19

stjohn: once they decided on the iv iron, i showed my doc the iv iron guidelines again. i think he read it. because we will do a blood test 8 weeks from now. the last round of iv iron i had, my doc did a blood test within 1 mth.... and he doesn't want me to change my requip use until at least 8 weeks later. im grateful for ur advice to give my doc a copy of the guidelines again


my first iv was 1000 mg ferric carboxymaltose (ferritin was about 50ish), the second iv was 500 mg ferric carboxymaltose ( ferritin 111, iron saturation 20%).

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

Re: Rate of Ferritin Decline

Postby fuz_mind » Sat Aug 03, 2019 2:24 pm

stjohnh wrote:
fuz_mind wrote:...
im apparently the first person to ever receive iv iron for rls......and the sleep specialist in my country ...

i give up...


Any possibility of going to another country to get treated?


i considered going to the States for treatment in 2017/2018, but legs were too bad to make the flight

i might consider korea given that there are some research being done in korea now with the recent publications

stjohnh
Posts: 976
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Rate of Ferritin Decline

Postby stjohnh » Sat Aug 03, 2019 3:57 pm

fuz_mind wrote:
500 mg IV ferric carboxymaltose over an hour. 1 infusion only on 29.7.19

stjohn: once they decided on the iv iron, i showed my doc the iv iron guidelines again. i think he read it. because we will do a blood test 8 weeks from now. the last round of iv iron i had, my doc did a blood test within 1 mth.... and he doesn't want me to change my requip use until at least 8 weeks later. im grateful for ur advice to give my doc a copy of the guidelines again


my first iv was 1000 mg ferric carboxymaltose (ferritin was about 50ish), the second iv was 500 mg ferric carboxymaltose ( ferritin 111, iron saturation 20%).


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.
Blessings,
Holland

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

Re: Rate of Ferritin Decline

Postby fuz_mind » Sun Aug 04, 2019 4:20 am

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?


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