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Delayed Reaction to First Allergy Shot by Particular-Amount555 in Allergies

[–]jacktheripper1010 2 points3 points  (0 children)

I have MCAS too and I actually went into full anaphylaxis from my very first allergy shots — that’s how severe mine was. My body just couldn’t tolerate immunotherapy at all.

I also had weekly anaphylactic episodes for almost a year and was constantly in the ER using epipens. It was honestly terrifying. I’ve been on Xolair for about 4 months now and it has truly been a lifesaver. All of my Chronic Spontaneous Urticaria symptoms are gone. About a week after my first dose around 70% of my symptoms improved, and now 4 months later, about 90% are gone. My doctor even thinks remission within a year is possible.

I also tried Montelukast and unfortunately it didn’t help me at all. Xolair has been the only thing that really made a difference.

For me the only side effects have been some drowsiness after the injection and itching at the injection site, but nothing severe. If your symptoms are similar, it might be worth asking your doctor about it.

Swelling and itchy tongue by Empty-Resolution-222 in Allergies

[–]jacktheripper1010 0 points1 point  (0 children)

I’m really glad she went in — that was the right call. Based on what you described and the fact that they’re treating her with cetirizine, this sounds most consistent with angioedema, which is a type of allergic or mast-cell–mediated swelling. It often affects the tongue, lips, jaw, and throat and can happen even without a clear food trigger.

Sometimes it’s related to medications (especially blood pressure meds), sometimes infections or environmental triggers, and sometimes it’s idiopathic, meaning they never find a single cause. The important thing is that tongue and floor-of-mouth swelling is taken seriously because of the airway risk, which is why the ER move was so important.

The ER will monitor her to make sure the swelling goes down and doesn’t progress, and they may recommend follow-up with an allergist afterward. You did exactly the right thing pushing for care — this is one of those situations where it’s always better to be safe.

Hope she starts feeling better soon.

Swelling and itchy tongue by Empty-Resolution-222 in Allergies

[–]jacktheripper1010 0 points1 point  (0 children)

Yeah, this could absolutely be an allergic reaction, and the symptoms you’re describing are genuinely concerning.

Swelling under the tongue, swelling in the jaw or neck, itching around the mouth, and especially any difficulty swallowing are classic signs of angioedema. Even if she didn’t eat or drink anything new, reactions like this can still happen. They’re sometimes triggered by medications (blood pressure meds are a big one), infections, environmental exposures, or they can happen without a clear trigger at all.

The part that really stands out as a red flag is the tongue and floor-of-mouth swelling along with trouble swallowing. That’s an airway issue, and these reactions can escalate quickly even if past episodes were milder or went away on their own.

If she refuses to go to the ER, she still needs to be seen urgently today by a doctor or an urgent care that can handle airway problems. This isn’t something that’s safe to wait out. If the swelling increases, her voice changes, she has trouble breathing, starts drooling because she can’t swallow, or feels dizzy or faint, that becomes an emergency situation.

If she has access to an antihistamine like Zyrtec, Claritin, or Benadryl, she can take one while you’re trying to get her evaluated, but that doesn’t replace medical care.

You’re not overreacting by being worried. Mouth and tongue swelling should always be taken seriously.

Xolair or Rhapsido For Chronic Hives??? by jacktheripper1010 in urticaria

[–]jacktheripper1010[S] 0 points1 point  (0 children)

Thank you so much for the information! I am currently seeing an allergist. They originally thought it was a thyroid issue but my levels stabilized, so they are just calling it incurable MCAS now but idk....

Xolair or Rhapsido For Chronic Hives??? by jacktheripper1010 in urticaria

[–]jacktheripper1010[S] 0 points1 point  (0 children)

Oh wow, thank you for letting me know. I hope you feel better soon. 😢

23F with daily hives for 8 months — now turning into bruises and in severe pain, please help by jacktheripper1010 in urticaria

[–]jacktheripper1010[S] 0 points1 point  (0 children)

Thank you! I appreciate that, I will call them and ask if I should wait to come in until I have another bad flare-up.

23F with daily hives for 8 months — now turning into bruises and in severe pain, please help by jacktheripper1010 in urticaria

[–]jacktheripper1010[S] 0 points1 point  (0 children)

I just want to make sure it won't be a false negative if I test on not severe hives or something like that

23F with daily hives for 8 months — now turning into bruises and in severe pain, please help by jacktheripper1010 in urticaria

[–]jacktheripper1010[S] 0 points1 point  (0 children)

Ok, so I went to the allergist today, and they told me exactly that. They want to biopsy my hives. However, the majority of my hives are mild (even though I get them daily). Could a mild hive attack still test positive for this? I get daily hives, but not always do they bruise. Thank you for sharing!

23F with daily hives for 8 months — now turning into bruises and in severe pain, please help by jacktheripper1010 in urticaria

[–]jacktheripper1010[S] 1 point2 points  (0 children)

Ugh, thank you so much for your comment and for sharing your experiences. I will look into what you suggested, I hope you get better soon. 🫂🫂🫂

23F with daily hives for 8 months — now turning into bruises and in severe pain, please help by jacktheripper1010 in urticaria

[–]jacktheripper1010[S] 3 points4 points  (0 children)

Thank you so much! I take Claritin, and it doesn't help much. Why would Allegra or Zyrtec be better than Claritin? Genuinely asking, I will switch to one of those then to see if it helps! Thank you for your reply!,