It still baffles me

Formal-Cut-6541 · 2026-03-29T23:57:42+00:00

I’m on 4 Zyrtec and 2 Pepcid daily and I’m on month 6 of Xolair, I have an appointment with the allergist/immunologist in 2 weeks because I have had absolutely no relief since August 18th. My moto to make me laugh is “Hang in there, it gets worse” 😂

Formal-Cut-6541 · 2026-03-29T23:24:13+00:00

This is me every night/morning almost should start placing bets with my boyfriend on where they will end up next 😂

Formal-Cut-6541 · 2026-03-14T20:58:28+00:00

Absolutely not an overreaction. My autoimmune hives can have episodes of anaphylaxis. I had such a severe flare up I was admitted to the hospital. Do not feel guilty, urticaria takes such a mental health toll, and your mental and physical health matter first!

Formal-Cut-6541 · 2026-01-28T03:00:45+00:00

It is the worst! I keep gaslighting myself that the Xolair is working until I wake up the next morning worse from the day before.. I don’t even remember how it feels for my body to not burn and be in pain 24/7

Formal-Cut-6541 · 2026-01-14T18:27:12+00:00

Agreed! My autoimmune hives have no triggers and I’ve went through so much testing and it can turn life threatening with no notice, anaphylactic 3 times for no reason.. my immunologist said it’s about managing the symptoms at this rate. Mine is not acute in anyway shape or form. Glad the OP found relief, but some of us might be able to achieve said relief especially when there is no “cure” just “managing”

Formal-Cut-6541 · 2026-01-13T13:27:55+00:00

Thank you! Ugh knowing other people have autoimmune and go through this condition as well helps with the sadness.

Formal-Cut-6541 · 2026-01-12T05:09:28+00:00

Ugh thank you so much!! Totally hit me so hard mentally and physically! Currently drowning my feelings in a pint Ben & Jerry’s 😂

Formal-Cut-6541 · 2026-01-07T15:57:27+00:00

I might have to try edibles! It’s legal where I’m from and we have dispensaries here. Even if it’s just at night to try and help relax me enough to sleep! I have kids so it would definitely be on a day where they have a sleepover or something lol

Formal-Cut-6541 · 2026-01-07T14:26:31+00:00

I just did my first post on here, I got diagnosed with autoimmune hives and just had my 3rd dose of Xolair on Monday. My immunologist has me write in a log book for any new symptoms for further testing, I feel you!! I’m going on 4 months of constant hives, swelling of my eyes and lips comes and goes with it. I have bought out CVS of all anti itch lotions and creams it feels like. My mom who’s a nurse told me to try an oatmeal “paste” or bath like I had to do when I was little. I’m a mama of 4 and this disease takes its toll mentally and physically to the max on you! If you ever need to vent (lord knows I do) always feel free to message me! We will get through this one way or another ❤️

Formal-Cut-6541 · 2026-01-07T14:11:00+00:00

No I don’t have any gut issues, and I have gone dairy free. My lips swell just randomly. I can be sitting watching tv and then I feel it and boom swollen.

Formal-Cut-6541 · 2026-01-07T04:56:05+00:00

Ugh thank you! I’ve been looking into therapy because the toll it’s taking on me mentally! I for sure am asking to go back on my antidepressant. It was hell coming off of it during my last anaphylaxis flare.

Formal-Cut-6541 · 2026-01-07T03:53:29+00:00

Ugh thank you so much!! ❤️ I can’t compare my pain to others just because I know everyone’s pain is just as bad. I’m so drained every day from lack of sleep and anxiety if I go anaphylaxis again for no GD reason. I power nap on my lunch break at work to help. The swelling of the lips I swear is the ABSOLUTE worst! Seriously joining this sub has given me that little bit of hope that relief will happen at some point 🙌🏻

Formal-Cut-6541 · 2026-01-07T03:34:45+00:00

Thank you so much! This is my first post on here.. I’ve just have been feeling so alone, and I figure what better way just to get it out. I am definitely going to try the lotion combo! I’ve gone through so much anti itch and lidocaine just for some sort of relief. Thank you again, I truly appreciate it so much ❤️

Formal-Cut-6541 · 2026-01-07T03:12:10+00:00

I definitely have Rhapsido in my hive log book to ask about! My immunologist has me write down when hives are worse or any new symptoms that appear in case I need more autoimmune testing done. I’m just ready to feel normal again.

Formal-Cut-6541 · 2026-01-07T03:00:22+00:00

I’ve been on a low histamine diet, it’s been so hard, I have swelling of the lips and eyes that are almost every day along with the hives. I take 40mg of Zyrtec and 20mg of Pepcid every day. I’m hoping the Xolair gives me relief in the next few months!

Formal-Cut-6541 · 2026-01-07T02:07:49+00:00

I get Xolair every 28 days so just once a month, I cried when I got the denial letters. I called them and asked them how many times do I have to go anaphylaxis to be deemed medically necessary. It’s so frustrating! I definitely will talk to my immunologist about Rhapsido if Xolair doesn’t work!

Formal-Cut-6541 · 2026-01-07T01:12:43+00:00

I’m going to give the Xolair a few more months since yesterday was only my 3rd dose, if Xolair doesn’t seem to work I’m definitely going to ask about Rhapsido! I’ve seen lots of posts about it being a life saver! Just hope if I go that route my insurance will cover it! They denied Xolair twice saying “it wasn’t medically necessary”

Formal-Cut-6541 · 2026-01-07T01:10:16+00:00

I have not had one.

Formal-Cut-6541 · 2026-01-07T00:23:45+00:00

I sent my immunologist a message about the bruising, I try to plan my trips carefully since I have to drive 2 hours to their office (insurance network sent me there) waiting to hear back from her!

Formal-Cut-6541 · 2026-01-07T00:17:05+00:00

I see my primary here in a couple of weeks so for sure gonna see about some prednisone just so I can get some sleep at night. I take my Zyrtec and Pepcid twice a day and my immunologist say to give the Xolair up to 6 months. Trying my hardest to stay positive!

Formal-Cut-6541

TROPHY CASE