Activity Stream - Wegener's Granulomatosis Disease GPA Support Forum

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09-28-2023, 08:20 PM

John S replied to a thread Confirmed Diagnosis in General WG Chat

I’ll be getting an infusion at Loyola in Maywood, IL today. I’m still getting 500 units every six months. Rituxin has done miracles for me. I rarely...

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86 replies | 97810 view(s)
09-20-2023, 07:03 AM

CapeKay replied to a thread One Year After Diagnosis in New Member Introductions And Stories

Ben, Thank you so much for sharing all that. I had many of the same symptoms in the same time frame and was also misdiagnosed with pneumonia. It...

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1 replies | 136 view(s)
09-19-2023, 10:53 PM

CapeKay replied to a thread First Time On Rituximab! in Medication

Wow. That is a great story Chadwyck. I will soon have a second round of Rituximab infusions. I thought I had some initial improvement but right now...

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7 replies | 244 view(s)
09-19-2023, 10:08 PM

crowneagle started a thread Is Wegener's a mitochondrial disease? in General WG Chat

True story! During my recent relapse, my rheumy was testing my Creatine Kinase. I hadn't had it tested since before being diagnosed. My CK levels...

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0 replies | 71 view(s)
09-18-2023, 10:41 AM

Chadwyck replied to a thread First Time On Rituximab! in Medication

Ok, it has been exactly 16 days since my Rituximab infusion. What a difference! Every single problem I've complained about in the last 6 months are...

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7 replies | 244 view(s)
09-17-2023, 01:12 AM

Ben started a thread One Year After Diagnosis in New Member Introductions And Stories

Hi All, Been lurking here for a few months, just wanted to share my story. The forum has been very helpful in understanding what everyone has...

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1 replies | 136 view(s)
09-11-2023, 02:42 AM

bjacobs replied to a thread Severe head sensitivity and when do symptoms get better in Tracheal Stenosis

Thank you so much, Kathy. That is very helpful information because we were having trouble confirming that this was in fact a symptom of GPA. His...

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6 replies | 587 view(s)
09-10-2023, 09:09 PM

gilders replied to a thread New Member in New Member Introductions And Stories

Welcome AmyG Glad to hear things seem to be heading in the right direction now.

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3 replies | 193 view(s)
09-09-2023, 10:55 PM

CapeKay replied to a thread Severe head sensitivity and when do symptoms get better in Tracheal Stenosis

Just an update. My new Doc at MGH that specializes in GPA believes that I have had it all along and that possibly what was previously diagnosed as...

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6 replies | 587 view(s)
09-09-2023, 10:48 PM

CapeKay replied to a thread First Time On Rituximab! in Medication

Thanks for sharing all that. I get frustrated, and scared, when I encounter a lack of understanding the seriousness of this disease. My own account...

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7 replies | 244 view(s)
09-09-2023, 09:33 PM

CapeKay replied to a thread New Member in New Member Introductions And Stories

Thank you Amy for sharing your story. I am also from the Boston area and, after 2.5 years was finally diagnosed with GPA at BWH. I am now seeing a...

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3 replies | 193 view(s)
09-06-2023, 09:26 AM

andrew started a thread Why did my post get moderated? in Forum Rules and Information For New Members

Greetings. When you submit a post to an existing thread or start one of your own, you may see a message that your post has been moderated....

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0 replies | 87 view(s)
09-05-2023, 09:57 PM

Pete replied to a thread New Member in New Member Introductions And Stories

Welcome to the “club” AmyG i’m glad to see you’ve found good docs. I also have eustachian tube dysfunction. Fortunately, it doesn’t bother me too...

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3 replies | 193 view(s)
09-05-2023, 04:24 PM

AmyG started a thread New Member in New Member Introductions And Stories

Hello all! I'm Amy, currently 49, and I'm from just outside of Boston, MA, USA. The TL;DR version is that, after 2 1/2 years of misery, I was finally...

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3 replies | 193 view(s)
09-05-2023, 03:40 PM

AmyG replied to a thread Wegeners Granulomatosis / GPA specialists in General WG Chat

Here's who I see. John Niles, MD Vasculitis and Glomerulonephritis Center at Massachusetts General Hospital, Boston, MA, USA...

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34 replies | 65953 view(s)
09-05-2023, 08:31 AM

crowneagle started a thread Salivary Gland Involvement? in General WG Chat

Spent seven hours in an emergency room, with what I originally thought was a swollen gland, from a recent low lymphocyte count, after four infusions...

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0 replies | 70 view(s)