r/IVIG

Hey y'all. I started Xembify on 4/1/2026, and I have had two infusions total. First one, I had a gnarly headache and bad fatigue for a good few days as well as my bone pain and overall aches and pains ramping up. Second one, seemed okay until the next day, I was completely wiped out, and the side effects from the first infusion also kicked in.

So this is where things start to change. Two days later, I woke up with a tomato red arm , in the infusion site, that was hot to the touch. I assumed just a delayed reaction. But the next day, I woke up with a rash in the infusion site. Small little bumps, similar looking to cholinergic hives. The next day, I noticed the previous infusion site, from two weeks prior, was doing the same thing. And then, they started to spread. Mostly localized to my arms, where the infusions were administered, but rapidly spread. My fatigue off the charts. Brain fog, so bad. Off and on headaches, chills and upset stomach. Some of the worst bone pain I have ever experienced.

I spoke to Grifoils, the manufacturer of Xembify, and they advised I stop the medication, and informed me this was more indicative of a systemic reaction, and could potentially get worse the next time I infuse. However, my immunologist wants me to continue. He did say the reaction was concerning, but he wants me to continue! I don't feel comfortable with this at all. He is adding 4mg dexamethasone to my pre-med regimen (which, the pharmacy is taking their sweet time filling this) and he did say he also is concerned about it getting worse and that it's a systemic reaction as well.

I don't know what to do. I'm very scared to be honest, and I don't think it's safe for me to continue. I'm not sure as to what the issue is either or how to narrow it down. I have multiple medical conditions, including SAD (which is what the SCIG was prescribed for), mast cell involvement (my diagnosis for the last few years is MCAS, but immunology and specialized gastroenterologist suspect that I actually have either indolent systemic mastocytosis or monoclonal mast cell activation syndrome), small fiber neuropathy, ehlers danlos, primary adrenal insufficiency, and dysautonomia. I am on a daily cocktail of all kinds of mast cell stabilizers and I am steroid dependent due to the adrenal insufficiency. I am not sure what is causing the reaction, if it's reacting to excipients in the medication, the medication itself, or who knows. I did ask before I started infusions to be tested for anti IGA antibodies but I was told that wasn't necessary.

I pre med with benadryl. I have been on a sick day dose of steroids and extra antihistamines for the last week and it barely has made a dent in this reaction. I'm worried about this getting worse, and not only triggering a worse reaction, but the reaction triggering an adrenal crisis. This is so stressful.

Hi all, does anyone have experience going from having a vein to getting a port? Was it helpful or hurtful overall?

Id appreciate any insights, thank you!

I have BCBS TX and a 20+ year history of PI. I make no IgA, have low IgG2, and failed the pneumovax multiple times (best I ever got was 2/23). And still, despite strong pushing from my immunologist and the infusion company, I have been denied 3 times. They now are saying that IgG subclass deficiency is no longer covered as of 2026. But I went through their policy and met every single criterion for PI patients (non cvid) to be approved. What the heck gives? I’m writing this with my 6th sinus infection of the year. I’m at my wits end. My immunologist has said I need SCIG or IVIG for years, I finally get to a breaking point with my health where I’m ready to try, and then this?

I slowly progressed with leg weakness .. started off as drop foot then progressed to my legs making them very weak. I was given ankle braces to help support me walking around so i wouldn’t trip and help with balance which was ok but then i got really sick and hospitalized with an entirely different health issue. Since that recovering from being hospitalized my legs have become extremely weaker to where i have to rely on a walker now to get around. I’m scheduled to get IVIG next week and also next month. Just hoping it helps my condition so i can possibly get away from this walker . Any response is appreciated . Thank you .. what i would like to know is how bad was your condition and how long it took for you to notice improvement if any improvement at all.

Hello,

I have a very rare illness of which my team of doctors has only limited understanding. The loose diagnosis is secondary MCAS with underlying immunodeficiency. My worst symptoms are generalized cognitive dysfunction that is temporarily triggered by even trace, airborne sugar. My doctors believe this temporary brain inflammation is caused by a highly stressed--and in some ways deficient--immune system, as my diagnosis indicates. Anyway, a couple of them have joined a VERY expensive group--essentially a concierge program. My neurologist and immunologist--both focused on complex illness--want me to try IVIG. So far, the concierge program paid for the "ramp-up" --2 weeks of 5g; 2 weeks of 10g--but we have not yet moved to therapeutic amounts, nor is it clear how I'm going to get it funded.

The first attempt to put it through insurance failed. I'm soon to meet with my neurologist (she's been out after serious surgery), and I'm sure we'll strategize. My question to you is if you have any thoughts about how I can get IVIG covered, one way or another.

Thanks so much, in advance!
Catherine

https://preview.redd.it/p64x5yirscxg1.png?width=721&format=png&auto=webp&s=8af8f5deb715bbf8ee0510e770c57b4a3bda96dc

Also, my B cells remain low at 4% and the ref range starts at 6%. I had a great response to the Vaccine Challenge, but continually low on my igG values. I have terrible gut problems (Sibo, C. Diff) and lung nodules (being monitored only) but haven't hardly been sick this year (although I am usually very sick back to back). My question is: I wonder if IVIG would be approved due to my gut problems. I just can't see it happening with a good vaccine response. And do I have a PID even though I had a good vaccine response???

I have a question for those who do infusions of IVIG &/or AXatilimab🙏

Just got my first dose of both on Tuesday & since then, been experiencing body & muscle pain & headaches. I stay away from Google & looking online & wanted to know if anyone had those side effects after? Thank you. Oh & also throw in some fatigue as well in the mix😭 Had to add some humor🥹

Hi I’ve posted before about switching to gammunex but I was wondering if body aches and fatigue was common with this one I’ve been doing scig for about 7 years and I have never felt so exhausted in my life I done hizentra then started to have frequent reactions but my IGG numbers aren’t going up and I feel awful my provider said that he thinks it could be something underlying and not the treatment but I just wanted to see if anyone else had this experience with gammunex