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New User - Dx'd 6/12
Hi -
Very happy to have found you!
The bullet point version of my story is this:
• 7 years of chronic idiopathic edema and urticaria, treated with cellcept, prednisone. Astepro and fluticasone as prevention for chronic sinus infections.
• intense roaming joint pain in May of 2012 diagnosed as RA.
• coughing up blood in June of 2012, chest X-ray showed masses and bronchoscopy to collect some samples but not to test for WG (TB, Sarcoidosis, The Big C were the focus).
• woke up from bronchoscopy feeling awful and didn't get better, developed fever. A trip to ER and admission to the hospital - the thinking was "infection" from procedure. Only meds were IV antibiotics.
• blood tests and lab work back - no infection and all of the previous suspects ruled out - pulmy suspects WG and brings in team. Rhuemy takes charge, all hoping I start showing blood in urine so they can do kidney biopsy, start IV steroids to treat the bleeding in the lung.
• 7 days into my stay I show blood in urine. Kidney biopsy performed. Discharged on day 8 no longer coughing up blood - or a lot less at any rate and feeling much better on the 'roids.
• first of 4 Rituximab weekly infusions 3 weeks after leaving hospital. Tapered of prednisone 7 months later and had a great result. 2 flares with joint pain but no other symptoms (more in a minute) and no treatment recommended by rheumy expect monitoring closely.
Couple of new symptoms I am experiencing now to see if anyone has had this experience and if it's related to WG.
1) tingling/burning on the tip of my tongue.
2) numbness on my lip, face and nose/upper airway (had this back in the edema/urticaria days).
3) spontaneous skin eruptions on my back that look like scratches.
4) chroic folliculitus on a portion of my scalp (this was occurring just before my roaming joint pain, went away after the WG treatment and is now back).
I realize this this is minor stuff compared to what many of you are dealing with but I feel better for documenting it with this great community of WG experts and empathizers.
May God bless you and the great work you are doing.
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