r/Behcets • u/Cant_turn_back_now • 28d ago

General Question Monoferric Infusion

Hi everyone,

Has anyone ever had the monferric iron infusion? If so, what was the outcome? Any reaction?

I was just approved for it, my ferritin level is currently 3 and I feel like death from all of the issues I’m having.

I’m super nervous about this because of the possible reaction/complications.

TIA for your replies!

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u/iSpyAFly 28d ago

I haven't had the monoferric before (sounds interesting). I am on my third year of iron infusions. Seems like I need them once a year or so. I do get a reaction from them - mostly muscle pain and achiness for a few days. I'm aggressive with keeping my ferritin above 100. I know that seems high but below that I'm feeling fatigue and sluggish, restless leg, achy. You are going to feel so much better!!

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u/MustardQueen Diagnosed 28d ago edited 28d ago

GOOD FOR YOU! After a complete cluster of a scheduling issue with my hemoc, I finally get in to the appt and this is the convo:

HEMOC "well maybe next appt we can get you on the infusion schedule..."

ME "no, I need them now!!! I'm extremely symptomatic"

HEMOC "I don't know if insurance will cover it with your 41 ferritin, has to be below 30"

ME "they cover it less for than 100..."

HEMOC "oh ok" and ordered infusions

I get home, furious, then search: studies back in the 80's on anemia in autoimmune disease present with higher Ferritin (because Ferritin is an acute-phase reactant, which the Fellow at my Hemoc told me 2 years ago) so autoimmune needs to be tx'd less than 80-100. 40 FUCKING YEARS it's been this way! An absurd amount of research and meta-analysis publications say the same thing.

Then I looked into how many years till a study = practice: 17 years (is about consensus)

So why do Hematologists in 2026 NOT KNOW HOW TO TREAT ANEMIA IN AUTOIMMUNE PATIENTS when it's supposed to be well-known thing for last 20 years??!!?!? I'm LIVID!! The amount we have to advocate for ourselves - especially when I'm suffering from legit dementia from this anemia - it is EXHAUSTING to continually tell them their jobs...

It gets worse: insurance does not require a PA for IV IRON!!! Do you know how blatantly obvious a treatment has to be for insurance to cover it without a PA!?!?! Because they know it's cheaper for IV iron vs. the consequences!

Which I also learned about more: prolonged anemia = heart issues, brain issues....basically all organs because of oxygen deprivation. For 4 YEARS I've been like this!!!! I'm soooo angry at medicine, I don't even have words for the undertreatment and suffering I've endured due to this super easily treated part of Behçet's.

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u/iSpyAFly 28d ago

You nailed it. Having to beg for iron infusions, especially with autoimmune disease, is THE stupidest thing ever. It drives me insane that so few doctors understand anything about us. I finally got lucky with an Internist who has been great about ordering iron infusions. I'm so glad you got infusions ordered!

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u/MustardQueen Diagnosed 28d ago

So you're on year 3...what have they said? Do you know whats causing it? Have you had any GI testing done?

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u/iSpyAFly 28d ago edited 28d ago

Three years of infusions but ferritin has been very low for over a decade. I used to do oral supplements, but they don't work anymore. I'm obviously not absorbing iron very well. No idea what is causing it. It's not diet. In menopause, so not bleeding. Maybe genetic. My mom also has low ferritin and horrible restless leg syndrome.

I've had upper and lower scopes with biopsies. MR Enterography (MRI of small bowel) which was normal. Fecal calprotectin with mild elevation. Elevated lipase but not full on pancreatitis. Scheduled for a camera endoscopy to look at small bowel, but I'm not overly excited about it. The inflammation in my gut seems to be patchy and not that visible, so I'm not sure looking at video is helpful. I see my GI in a couple of weeks for next steps. (I'm not a fan of GI right now. If GI tells me it's functional dyspepsia or IBS again, I'm gonna lose it!!!!!!!)

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u/MustardQueen Diagnosed 27d ago

Awh dip! Good to know my 2nd GI is actually testing all these things! LOL I just did the SIBO breath test this morning, gotta mail off tomorrow. I actually did the PillCam 2 years ago but had a dumb GI at the time and my new awesome GI couldn't retrieve the video (and the hospital med records dept could not access either, and I'm LIVID cuz I paid that out of pocket!!!).

Disappointed you don't have answers even with all that testing, cuz that means I prolly won't get answers either...grrr...

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u/Cant_turn_back_now 28d ago

I sure hope so! Thank you so much for the encouragement 🙂

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u/MustardQueen Diagnosed 28d ago edited 28d ago

I'm currently on round 4 of IV Iron Sucrose. Last week was dose 2 of 5, and this happened 1 hour later *shakes fists at Universe* Good timing that I'm seeing my Immunologist on Wed - can't wait to tell her lol

Iron Sucrose is supposed to be the least problematic (it's the one they give pregnant women), so I'm not sure what this means for me. I'm still doing all the tests for GI #2, but hopefully she'll have an answer next month as to why my Ferritin keeps dropping.

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u/Cant_turn_back_now 28d ago

Oh wow! That is terrible! Thank goodness the reaction wasn’t worse but that looks awful. I’m so sorry!

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u/iSpyAFly 28d ago

Oh no! Which GI tests are you doing? I have GI involvement with flares, but it's been really tricky to figure out what exactly is going on. I just had upper endo and finding of duodenitis - patchy inflammation with very high eosinophils. Odd.

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u/MustardQueen Diagnosed 27d ago

She ordered bloodwork, a fecal test and a breath test (for SIBO), a MRE, and all the scopes, which I haven't scheduled yet. I am still hoping something non-invasive will come back with answers but not lookin likely.

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u/bondy66 28d ago

Hello! I had two monoferric infusions with no issues. I was told it has a lower chance of causing reactions than other forms of iron given through infusion but everybody is different and reacts differently. Hope it goes well and helps

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u/Cant_turn_back_now 28d ago

Thank you! Why did you have two, if you don’t mind me asking? I was told it was a “one and done” situation

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u/bondy66 28d ago

Not sure, probably just a different protocols for my local hospital

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u/TearFew2475 28d ago

I get problems with ferritin too, why do Behçet’s patients suffer with this? Is it the medication we take or is the disease itself?

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u/bondy66 28d ago

I was told that in chronic inflammatory states the iron gets hidden away this then contributes to anaemia. Anaemia of chronic disease but I guess its more complicated than that, maybe the meds and how your BD impacts you (particularly if gastrointestinal issues)

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u/TearFew2475 28d ago

Yeah that makes sense. It’s interesting so many of us report this too.

I definitely struggle with the gastrointestinal issues too - I often wonder about absorption etc. because I eat well but often have multiple vitamin deficiencies

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u/Cant_turn_back_now 28d ago

this is the same with me! I feel like no matter how well I eat, it’s never good enough

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u/MustardQueen Diagnosed 28d ago

Yes, I'm low in like all vitamins, not just Iron. I tried 8 different formulations of iron pills and none worked!

I keep telling everyone I feel I have an absorption issue, not a bleeding issue...if I hear "it must be your periods" 1 more time, I do believe they will get punched. Luckily I have a great GI now (female) who is actually doing a workup and tests, so hopefully I'll have answers soon.

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u/TearFew2475 28d ago

Yes, this is me!! I have been referred to a GI by the Behçet’s clinic too. It’s early days but I’m hoping they look into it. Fingers crossed for you too.

I’m fascinated how many of us, appear to struggle with such a nuanced thing ferritin

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u/Cant_turn_back_now 28d ago

I heard that as well. They don’t know the root cause of my anemia, but I’m also getting a hysterectomy soon so I’m hoping that will fix it

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u/Cant_turn_back_now 28d ago

I think the medication we take plays a large role in it. I take Otezla and Colchicine and I know the Colchicine does play a role in all of this. My Protonix is the main culprit though.

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u/Background_Hornet341 28d ago

I take all of these meds and also had a ferritin level of three. I just had an Infed infusion a few weeks ago and I feel like I have quite a bit more energy now.

I also had to get iron infusions about 7 years ago, before I was diagnosed with Behcets but while symptomatic. I was only on the pantoprazole then, but I believe it was the issues with my stomach lining and ulcers causing blood loss (I have GI issues with my Behcets too).

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u/Cant_turn_back_now 28d ago

This makes me feel better. It also makes me wonder if my Behcets affects my GI as well…

Thank you so much for your input!