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PMR after COVID

Polymyalgia Rheumatica (PMR) | Last Active: Jun 28 11:39am | Replies (5)

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@joan7

I'm going to throw this question out there, because according to the doctors I am a medical mystery when it comes to one symptom. I've been to UPenn and multiple Rheumatologists, Allergist, Immunologists, Post Covid Clinic @ UPenn, etc. I cannot intake a regular amount of salt, and I am not talking about getting older and having water retention issues. I have had anaphylactic issues where my tongue has swelled and has closed my airway. I am not a hospital type person as you can see from my message above. The only time I went was when my family thought I had a stroke. The only thing that saved me was my son being in the right place at the right time, Benedryl and ice water. Looking back now I realize things could have ended up very badly. So, my question is: Did anyone ever have a reaction to salt (not including shell fish) that was so extreme and continued to happen repeatedly? During that time when this was occurring I had to limit my salt intake to under 50 to 75 mg a day compared to the normal amount you should be able to intake which is the maximum of 2300 a day. I'm wondering if the inflamation throughout my body from my PMR caused this reaction to occur. Once I went on Prednisone it reversed this reaction to only my lips burning and peeling, and my esophagus burning (GI doctor did Endoscopy and results were normal). These are the symptom I currently experience on alternating 2 and 3 mgs of prednisone daily for my PMR treatment. No one knows how to treat this because it is NOT an allergy. Any response would be greatly appreciated.

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Replies to "I'm going to throw this question out there, because according to the doctors I am a..."

I also seem to puzzle some doctors as symptoms of different problems don't meet the normal criteria. I also suffer from angiodemia of the tongue and have been given every allergy test out there and all come back negative. My one lifesaver was actually my PCP who suggested we try a higher dose of allergy medicine daily which has been working. My tongue starts to swell now on occasion but stops at a certain point. I have Hydroxyzine on me all the time and still carry an EpiPen when travelling but haven't needed it. I also flare up with hives at any given time all over me from my face to my torso with no given reason. I take antihistamines but struggle with the itching until the flare up stops. I have learned to live with these unusual symptoms but see I am no alone in this strange medical dilemma!