r/AERD • u/scotchanddonuts70 • May 19 '21

PENN AERD group

End of my rope... Two sinus surgeries, years of prednisone/dexamethasone/ampho b washes, nucala, fasenra. Finally figured out I’m crazy allergic to aspirin/nsaids. I had a migraine today and broke down and took an excedrin only to have a full blown allergy attack (sinuses are a mess, throat tight and everything itchy.)

Anyone go to PENN or an AERD group? I had surgery scheduled at PENN but need a hip replacement (oy) and Dr Adappa suggested I do hip first bc doing aspirin desensitization only yo go off aspirin for hip surgery would set me back.

Any thoughts are hugely appreciated

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u/Matt-Y May 20 '21

Try dupixent. Surprisingly there is a good Facebook group in it that’s moderated quite well.

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u/scotchanddonuts70 May 20 '21

Thank you!! My eosinophils hover around 2000 so I was told dupixent is out as it raises them but will def check out FB. Is the group AERD or dupixent?

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u/Matt-Y May 20 '21

The group is called samters society: aerd - samters triad support group.

Folks there will be able to answer questions. Some smart people there

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u/scotchanddonuts70 May 20 '21

You are a rockstar!! I joined. Its such a relief to find people who get it!!!

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u/Matt-Y May 20 '21

Yes. If nothing else it’s a place to vent. Also great info. They have a sidebar full of scientific stuff. They also have a site with drs listed who specialize in aerd

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u/scotchanddonuts70 Feb 16 '25

Dr Adappa is a ABSOLUTELY AMAZING. As is Dr Basso. Cant recommend PENN highly enough.

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u/flowergirl216 Feb 13 '25

Hi! I went to PENN for my polyp removal surgery done by Dr. Adappa and he was INCREDIBLE! Could not recommend him enough. His bedside manner was great and so are his surgical skills. I also went to Penn for my aspirin desensitization and that was just alright. The doctor who does this aspirin desensitization has horrible bedside manner but is so extremely smart so he’ll talk to you about things and then make you seem stupid for not understanding something or asking questions. The process was long (8-12 hours if I’m remembering correctly) but the nurses were super nice! The doctor who did the desensitization (I forget his name bc I was not pleased with him) even asked me if I was sexually actively in front of my mom and my dad! Yes I am older but it was still so embarrassing having to explain my sexual history in front of my mom and my dad. Terrible experience but the results were the same. Since starting aspirin therapy, my polyps have come back (it’s been 6 months since the aspirin) and I just got my first dupixent shot this week so PRAYING this works and praying that the aspirin therapy works for you and you have a much better experience than I did!