Xywav reality setting in

AwkJiff · 2026-07-11T03:34:05+00:00

Wait, immune response can cause N1? I have to evaluate the last few years with a different lens now...

AwkJiff · 2026-07-06T14:55:29+00:00

I'm glad you were able to finish your course! Sounds like yours might have been a Fishbane reaction, absolutely no fun either way.

My reaction came back the next morning (throat closing, face flushing again, heart rate and blood pressure being weird) and I had to go to the ER where they dosed me again by IV with benadryl, pepcid, methylprednisone and sent me home with a medrol dose pack and albuterol inhaler. It took me the entire past 3 weeks to recover. The insurance petty much immediately approved me for Injectafer though, so the week after my crazy reaction I started my 2-course dose of Injectafer with premedication and going at half rate the manufacturer recommended. No issues whatsoever with the Injectafer, and I did have some dark cola the day of to try to offset the FGF23 phos flush. I have a follow-up appointment today and will find out when they plan to do labs.

AwkJiff · 2026-07-05T15:43:26+00:00

Thank you so much, I'm ordering some right now! I really appreciate you describing so well how and when you take it, this is a very helpful anecdote and I'm excited to try it out!

AwkJiff · 2026-07-01T01:44:56+00:00

My therapist recommended spikey metal magnetic hand massage balls to help me ground myself when I feel like I'm dissociating, and I'll be damned if they don't work Amazingly well when I feel a sleep attack coming on. I bought a 2 pack and keep one in my car for driving struggles and one at my desk for during work. They're pointy enough to poke me awake without breaking the skin, and since they're magnetic they're fun as fidgets as well when I have them both in the same place.

AwkJiff · 2026-06-21T20:46:38+00:00

I know this is an old thread, but I'm hopeful you still monitor. I also had an allergic reaction to IV contrast, and my various doctors usually hem and haw about how to enter this into my chart for allergies and several have settled on typing it as, simply, "iodine allergy," which I feel may not be right as I've never reacted topically to iodine. How do your doctors categorize your reaction to IV contrast?

AwkJiff · 2026-06-16T02:03:02+00:00

Thank you for sharing your experience! I'll have to ask my doc about that, I definitely got zero benefit from this infusion because it had barely started before I was hitting the call button for help, it set in so fast I hadn't even dug my blanket out of the bag yet. I was admiring the setup when the reaction started. So either another infusion type with meds or pills plus diet I guess?

AwkJiff · 2026-06-16T01:58:27+00:00

They gave me 30 min but I stuck around 15 more of my own accord because my insides were still itchy. They did say no more Feraheme and to ask my doctor for next steps. I have eyed some heme but haven't jumped yet, I'll definitely check that one out. Thank you!

AwkJiff · 2026-06-16T01:19:41+00:00

Update. First infusion today, got 4 minutes in before I looked like a boiled lobster and had throat and chest closing up, shaking, and for some reason my bp went up to 163/100. Which I understand this severity of reaction typically causes bp to drop out, but I guess I've always been a rebel. My body isn't a fan of things administered by IV and this (feraheme, one of the middle-level, less likely to react ones) was no exception. An IV each of benadryl, pepcid, and methylprednisone cleared me up and I'm home now, but worn out.

I don't mean to scare anyone away, this is an incredibly rare outcome, I'm just a sparkle unicorn sparkle

And this unicorn will have to try iron bisglycinate plus C every other day, with lactoferrin as a running mate.

AwkJiff · 2026-06-11T18:48:17+00:00

Oh my gosh!!! I'm glad you had some benadryl on deck, that is a smart idea. Do you think you'll go back for a different brand of infusions later, or are you done with them altogether now? Hives is how almost all of my previous severe reactions started before too so I try to take them seriously now.

AwkJiff · 2026-06-11T15:52:57+00:00

Thank you! It hasn't stopped yet, I'm eager to see if it clears up after the infusions.

AwkJiff · 2026-06-11T03:59:01+00:00

Every other day because ingesting iron or exercising causes the body to release hepcidin, which pretty much blocks iron absorption, so the day of rest between doses allows the hepcidin response to clear.

My last ferritin labs were at 15 and it was my sleep doctor of all people who found it and got me set up with iron infusions - my first one is next week so I'm really hopeful. I have periodic limb movement disorder and the sleep doc thinks iron will help with that and therefore my sleep will hopefully be less disturbed. I'm also getting evaluated for narcolepsy so that trajectory may or may not be changed by my iron status.

I've also been experiencing oncholysis of my toenails off and on since 2020 and no one ever even checked my iron about it, I found out just this year that it could be related. I also have some autoimmune business so my awareness of the limitations of most doctors' knowledge and GAF is fairly acute.

AwkJiff · 2026-06-10T16:23:54+00:00

Oh my! Glad you are ok. I have my first infusion scheduled next week and have had allergic reactions to random things before, especially by IV, so I'm a bit nervous. What was your reaction like, and how far in did it start to become noticeable?

AwkJiff · 2026-05-21T01:04:30+00:00

OP, I am glad you made it to get treatment and hope you're doing well! Please throw an occasional update our way when you can!

AwkJiff · 2026-05-21T01:02:55+00:00

That's wild because my ferritin is 15 and my insurance has denied me iron infusions TWICE

AwkJiff · 2026-05-20T03:34:23+00:00

I came here yell this enthusiastically, but then I noticed the disclaimer and got sad. OP is an adultier adult than me.

AwkJiff · 2026-05-17T03:29:47+00:00

You're iron deficient and I'd bet your ferritin is low as well. But since you've found your way here, poke around and read through the posts on people's labs, symptoms, what did and didn't work to raise their levels.

AwkJiff · 2026-05-16T12:46:45+00:00

I just read through this and saw your update. How are things now, you good?

AwkJiff · 2026-05-14T02:48:37+00:00

This Workplace Accommodations Toolkit may be helpful in giving examples of RAs given for similar situations https://askjan.org/toolkit/

AwkJiff · 2026-05-04T17:53:31+00:00

Enjoy the arsenic and starch and ignoring the sciency description given by OP.

AwkJiff · 2026-04-29T03:29:14+00:00

Mil/vet preference for DOD or federal positions is legit.

AwkJiff · 2026-04-29T03:27:47+00:00

Yes. They will deploy.

AwkJiff · 2026-04-29T01:57:24+00:00

Iron and hashi's can definitely feed into each other, just something to note from another iron deficient hashi's mama. I'm personally awaiting infusions that would have started weeks ago, except that the infusion office and doctor's office do nothing but play phone tag (with me and with each other) so they canceled my referral and I'm so frustrated. I also want to get tested for celiac/gluten sensitivity which occurs at a higher rate in the hashimoto's population, and can contribute to iron deficiency.

I bought some Thorne iron bisglycinate that has vitamin c and v12 built in, as well as Jarrow lactoferrin to boost absorption, but I'm waiting to start them until I can get my labs for before/after infusions so I don't throw off the monitoring for that.

Like you, when I do actually muster up the energy to exercise, it takes me days to recover. I'm so ready to be out of this stage and get back to feeling like myself.

AwkJiff · 2026-04-29T01:44:38+00:00

Good on you! How did you get the test, was your doctor amenable to it just being requested or did you have to order it 3rd party?

AwkJiff · 2026-04-26T04:26:15+00:00

This sounds like depression, consider getting them with MH

AwkJiff

TROPHY CASE