Activity Stream - Wegener's Granulomatosis Disease GPA Support Forum

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06-02-2023, 02:00 PM

crowneagle started a thread Low Complement Factor H and disease activity in AAV in General WG Chat

Complement Factor H helps regulate the complement alternative pathway. Genetically, I have lower levels of Factor H, which makes my complement system...

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0 replies | 45 view(s)
05-22-2023, 08:44 PM

J@$0N replied to a thread Newly Diagnosed in New Member Introductions And Stories

Sorry to hear about all you are going through. I don't understand doctors telling you not to ask questions. I was very fortunate with my...

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3 replies | 117 view(s)
05-22-2023, 11:50 AM

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

Oh that is very interesting, Kathy. I am going to ask his doctor if it could be that - it looks like the treatment is the same as what he has been...

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4 replies | 256 view(s)
05-22-2023, 10:19 AM

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

Years ago I was treated for GCA (Giant Cell Arteritis), a vasculitis of the temporal artery. I had a horrible symptom where my scalp felt like it was...

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4 replies | 256 view(s)
05-22-2023, 10:03 AM

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

Thanks so much Pete for your advice. I knew I was likely over reacting, out of fear mostly. I believe I did peek at the Vasculitis Foundation website...

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3 replies | 117 view(s)
05-22-2023, 02:09 AM

nagesh started a thread Reg- Marriage Alliance in General WG Chat

Hello everyone, I am from India Bengaluru. I am seeking some guidance regarding a delicate matter. 14 years ago, my now 27-year-old son was...

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0 replies | 55 view(s)
05-21-2023, 12:35 PM

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

CapeKay You’ve had quite the fight with both vasculitis and your doctor. Here are a couple of thoughts: > While the trip to Cleveland Clinic is a...

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3 replies | 117 view(s)
05-21-2023, 03:33 AM

Dirty Don replied to a thread Rituxan treatment for early stages Upper Respiratory in General WG Chat

Methotrexate & prednisone...really did help but took about 4-6 weeks to become truly effective - nothing in respect to serious side effects altho...

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4 replies | 85 view(s)
05-20-2023, 11:37 PM

J@$0N replied to a thread Early Stages GPA Treatment in General WG Chat

Sorry to hear the RT didn't work. Mine presented in my aorta and I was given 1000mg of RT once a week for 4 weeks and again every 6 months after...

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8 replies | 218 view(s)
05-20-2023, 12:45 PM

alan1107 replied to a thread Early Stages GPA Treatment in General WG Chat

Hey Jason, I had two. December 13th and 28th. With no relief in my symptoms by April, they did another CT and the pulmonologist said my lungs...

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8 replies | 218 view(s)
05-20-2023, 12:37 PM

J@$0N replied to a thread Early Stages GPA Treatment in General WG Chat

How many Rituxan treatments did you have?

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8 replies | 218 view(s)
05-20-2023, 12:05 PM

Bindy replied to a thread Rituxan treatment for early stages Upper Respiratory in General WG Chat

Hi Dirty don Thank you What did they treat you with when you had flare instead of RTX? Sent from my iPhone using Tapatalk

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4 replies | 85 view(s)
05-20-2023, 12:04 PM

Bindy replied to a thread Rituxan treatment for early stages Upper Respiratory in General WG Chat

Dirty Sent from my iPhone using Tapatalk

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4 replies | 85 view(s)
05-20-2023, 04:13 AM

Dirty Don replied to a thread Rituxan treatment for early stages Upper Respiratory in General WG Chat

My experience with Mayo, Dr. Mertz, was to knock the AI system down immediately with RTX. Then, when flares occur he is hesitant to keep using RTX,...

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4 replies | 85 view(s)
05-19-2023, 09:43 PM

Bindy started a thread Rituxan treatment for early stages Upper Respiratory in General WG Chat

In the case where a person with only upper respiratory involvement ie ulcers on septum, red eye, sinus, headaches and rash, the recommended and...

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4 replies | 85 view(s)
05-17-2023, 05:46 AM

CapeKay started a thread Newly Diagnosed in New Member Introductions And Stories

On April 6, 2023 a lung biopsy result officially diagnosed me with GPA. It took nearly 2 years. I have a history (beginning 2010) of being treated...

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3 replies | 117 view(s)
05-17-2023, 02:19 AM

CapeKay started a thread Newly Diagnosed in New Member Introductions And Stories

On April 6, 2023 a lung biopsy result officially diagnosed me with GPA. It took nearly 2 years. I have a history (beginning 2010) of being treated...

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0 replies | 25 view(s)
05-17-2023, 12:54 AM

Bindy replied to a thread Early Stages GPA Treatment in General WG Chat

Sorry to hear Rituxan failed, wishing you best of luck for your new treatment! Sent from my iPhone using Tapatalk

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8 replies | 218 view(s)
05-16-2023, 02:28 PM

alan1107 replied to a thread Early Stages GPA Treatment in General WG Chat

Upper respiratory only for me (cough, sinus, wheezing and shortness of breath. Diagnosed in November 2022, started Rituxan infusions in December...

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8 replies | 218 view(s)
05-16-2023, 08:27 AM

drz replied to a thread immune deficiency treatments and causes (probably caused by GPA treatments) in General WG Chat

i just started getting monthly IVIG infusions. The hope is that this might help me avoid the frequent infections I get from having a suppressed...

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1 replies | 58 view(s)
05-16-2023, 02:40 AM

little sister replied to a thread RTX and heart damage in Medication

I wish I saw this thread before I just posted a new thread. I have to begin immune therapy also. My immunologist is recommending subcutaneous rather...

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5 replies | 237 view(s)
05-16-2023, 02:13 AM

little sister started a thread immune deficiency treatments and causes (probably caused by GPA treatments) in General WG Chat

I relapsed with renal failure May 2022 and had 7 courses of plasmapheresis along with prednisone, Cytoxin and Tavneos. Hematologist tested my IgA,...

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1 replies | 58 view(s)
05-16-2023, 01:50 AM

drz replied to a thread RTX Efficiency in General WG Chat

There are many people who have been on RTX for years. some doctors think it may become less effective over the years but may continue to use it...

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1 replies | 63 view(s)
05-13-2023, 05:39 PM

Bindy replied to a thread The Legend Leonard Cohen in General WG Chat

Oh that's so sweet, I will have a look for some of his posts! Sent from my iPhone using Tapatalk

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3 replies | 93 view(s)
05-13-2023, 05:09 PM

mishb replied to a thread The Legend Leonard Cohen in General WG Chat

Hi Bindy, It's not really Leonard Cohen, but a wonderful man named Jack, that we all adored, and he adored Leonard Cohen, so used his picture as...

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3 replies | 93 view(s)
05-13-2023, 11:39 AM

Bindy replied to a thread Early Stages GPA Treatment in General WG Chat

Thank you! Sent from my iPhone using Tapatalk

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8 replies | 218 view(s)
05-13-2023, 08:56 AM

Bindy started a thread RTX Efficiency in General WG Chat

Hi, I was just wondering is there any evidence to show that Rituxin over time becomes less effective. Or does anyone have any personal...

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1 replies | 63 view(s)
05-13-2023, 08:38 AM

Bindy replied to a thread The Legend Leonard Cohen in General WG Chat

Sorry I think I wrote this in the wrong chat Sent from my iPhone using Tapatalk

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3 replies | 93 view(s)
05-13-2023, 08:36 AM

Bindy started a thread The Legend Leonard Cohen in General WG Chat

Hi, I recently read that Leonard Cohen was a part of this forum? Can somebody fill me in with the history as to why and how can you read his old...

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3 replies | 93 view(s)
05-13-2023, 12:31 AM

Pete replied to a thread Early Stages GPA Treatment in General WG Chat

@Bindy The short answer to your question is, “It depends.” We are typically dealing with drugs that have one of two functions. (1) Suppress an...

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8 replies | 218 view(s)