Severe Urticaria and bronchiectasis

Posted by bellescout @bellescout, Dec 29, 2024

I developed severe urticaria around the same time as my BE diagnosis. I am unable to be in weather 65 degrees F or below, use cold water or be in a breezy environment as I develop large hives and extreme red, itchy skin everywhere that was exposed. Unfortunate since I live in Wisconsin which keeps me inside about 7 months of the year. Has anyone else experienced this development?

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I have bronchiectasis but no urticaria. Your arm welt looks similar to some reactions I've had after allergy shots. What happens when you take allegra or other antihistamine? Perhaps you've developed an allergy to something new?

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@bellescout I wonder if this was a coincidence, or if you added or changed any medications after your Bronchiectasis diagnosis?
Otherwise, you may have developed a condition known as Cold Urticaria:
https://www.mayoclinic.org/diseases-conditions/cold-urticaria/symptoms-causes/syc-20371046
Does it resond to antihistamines?

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@sueinmn

@bellescout I wonder if this was a coincidence, or if you added or changed any medications after your Bronchiectasis diagnosis?
Otherwise, you may have developed a condition known as Cold Urticaria:
https://www.mayoclinic.org/diseases-conditions/cold-urticaria/symptoms-causes/syc-20371046
Does it resond to antihistamines?

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Sue- I had been having what was diagnosed as Eczema (first and only time having this problem) by my dermatologist and was given a prescription of CeraVe with medication made at a formulary pharmacy. It very much coincided with the beginning of my telling the doctors something is wrong since I was constantly needing to clear my throat and the final diagnosis of Bronchiectasis.
I say had been having because all of a sudden in the last month my legs and arms have improved immensely. I am hoping it might mean that the MAI infection is waning. Not that anyone, doctor, has said that it is related but I don't know of any other thing that I have been doing etc. that would have caused such an improvement. Any thoughts.???
Barbara

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@blm1007blm1007

Sue- I had been having what was diagnosed as Eczema (first and only time having this problem) by my dermatologist and was given a prescription of CeraVe with medication made at a formulary pharmacy. It very much coincided with the beginning of my telling the doctors something is wrong since I was constantly needing to clear my throat and the final diagnosis of Bronchiectasis.
I say had been having because all of a sudden in the last month my legs and arms have improved immensely. I am hoping it might mean that the MAI infection is waning. Not that anyone, doctor, has said that it is related but I don't know of any other thing that I have been doing etc. that would have caused such an improvement. Any thoughts.???
Barbara

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Excema is usually an allergic or autoimmune reaction. Other than having an angry immune system if you had undiagnosed MAI, I cannot explain why the two coincided. I would credit the cream from the pharmacy with helping before I would assume your MAI is improving.

If you were feeling anxious because you weren't feeling well, any little irritant or allergen could have caused the flare up. The anxiety that came with your diagnosis definitely caused more stress. And now that you have found answers to many of your questions, and a supportive community on Connect, perhaps both have lessened, allowing your body to heal.

PS My niece's eczema comes and goes with stress. We knew when her exams were coming in college because she would have a bad outbreak.

I'm glad you're doing better.

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I don’t have cold urticaria, but had a 6 month bout of autoimmune urticaria 12 years ago. I had a spontaneous remission-it disappeared just as it came with no obvious reason.

I’ve had mild bronchiectasis for 2 years and had no recurrence of hives until late November- this bout is extremely mild compared to other one with just a few random hives and unusually sensitive skin at night. This episode coincided with an upper respiratory/sinus infection with green mucus-a change from the usual infection with yellow. I don’t have an allergist/immunologist here and can’t get in to Penn’s until May. Since the treatment for mild hives is the same as for my allergies anyway, I’ll wait unless they get worse. They may be mild since I was already on antihistamines, though max doses didn’t work before.

I don’t think it’s related to bronchiectasis itself, but some specialist think it may be triggered or related to infections. You have my total sympathy-my other bout of hives made life miserable. I hope you find some relief!

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@sueinmn

Excema is usually an allergic or autoimmune reaction. Other than having an angry immune system if you had undiagnosed MAI, I cannot explain why the two coincided. I would credit the cream from the pharmacy with helping before I would assume your MAI is improving.

If you were feeling anxious because you weren't feeling well, any little irritant or allergen could have caused the flare up. The anxiety that came with your diagnosis definitely caused more stress. And now that you have found answers to many of your questions, and a supportive community on Connect, perhaps both have lessened, allowing your body to heal.

PS My niece's eczema comes and goes with stress. We knew when her exams were coming in college because she would have a bad outbreak.

I'm glad you're doing better.

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Yes Sue.....right....stress was playing a big part in my life for a good couple of years before the final BE diagnosis and for sure my immune system was compromised for a least a year and a half before I was diagnosed with BE and then came the knowledge of MAI and all one must do for oneself with both diagnosis. There was, with all the other stress factors that were visiting me, the stress of trying to figure out the why of what I was experiencing and was finally understood with the final diagnosis of BE. Of course, inflammation is/was also a part of it all.
Yes Sue less stress now for multiple reasons so your suggestion that all could be or be part of the reason why the areas of my skin appear to be looking better.
THANKS for your thoughts and help.
Wishing you many joyful hours with your loved ones this 2025.
Barbara

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I owe you an apology for not looking at the literature before answering. When I replied above, my hives were daily/nightly, but mild and I was hoping to wait for Penn’s allergist appt, a few months away. However, they’re gradually worsened and I had a phone appt with a local allergist a few days ago. She does seem to think my bronchiectasis, asthma and hives might be related and ordered several tests for antibodies and immunoglobulins (pending). As you probably know, the Inducible hives like yours and the autoimmune hives are different, but related.

I haven’t read much yet, but it looks like IgE and eosinophils are subject of research and the researchers think these diseases along with several others. Mayo checked both those labs, but it’s been almost 2 years and I wasn’t giving them.
Have you found out anything new?

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@pacathy

I owe you an apology for not looking at the literature before answering. When I replied above, my hives were daily/nightly, but mild and I was hoping to wait for Penn’s allergist appt, a few months away. However, they’re gradually worsened and I had a phone appt with a local allergist a few days ago. She does seem to think my bronchiectasis, asthma and hives might be related and ordered several tests for antibodies and immunoglobulins (pending). As you probably know, the Inducible hives like yours and the autoimmune hives are different, but related.

I haven’t read much yet, but it looks like IgE and eosinophils are subject of research and the researchers think these diseases along with several others. Mayo checked both those labs, but it’s been almost 2 years and I wasn’t giving them.
Have you found out anything new?

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My daughter gets eosinophilic hives frequently, but theyare worse if she is under stress. She has asthma, allergies, PTSD and possibly bronchiectasis (brought on by Covid pneumonia in 2020.) I worry for her future bone density because the only thing that works is steroids.

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Your poor daughter. They’re just the worst. Has she tried Zolair? It sounds like new doc plans to try it and I know some have a great response-hoping I’m one. During my last episode, the allergist who diagnosed it gave me a short term course of steroids while he increased antihistamines, but told me he didn’t use long term. It was the only thing that worked well so it was a grim few months.
I don’t think life stress has impacted mind so far. I’ve had periods of great stress without them, but I had the physical stressors of Covid, then rebound with positive tests until day 21 (with persistent low grade fevers even longer) and 2-3 weeks later had the sinus infection then the hives.

I sure hope the OP sees this or has a great immunologist.

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@pacathy

Your poor daughter. They’re just the worst. Has she tried Zolair? It sounds like new doc plans to try it and I know some have a great response-hoping I’m one. During my last episode, the allergist who diagnosed it gave me a short term course of steroids while he increased antihistamines, but told me he didn’t use long term. It was the only thing that worked well so it was a grim few months.
I don’t think life stress has impacted mind so far. I’ve had periods of great stress without them, but I had the physical stressors of Covid, then rebound with positive tests until day 21 (with persistent low grade fevers even longer) and 2-3 weeks later had the sinus infection then the hives.

I sure hope the OP sees this or has a great immunologist.

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She tried and failed - she uses two other biologics instead, I just don't remember which right now. She has a great pulmonology/ID/allergist team who just keep trying.
Zolair has been my brother's salvation - he has been on it for over 10 years, which enable him to live a somewhat normal life except during ragweed season/

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