Activity Stream - Wegener's Granulomatosis Disease GPA Support Forum

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02-01-2023, 11:07 AM

andrew started a thread ANCA Vasculitis study request for participation in General WG Chat

Hey all 23andme has picked out five rare diseases to study (https://www.23andme.com/rare-disease...ed-vasculitis/) and ANCA-associated Vasculitis...

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0 replies | 50 view(s)
01-31-2023, 05:29 AM

alan1107 replied to a thread Evusheld is no longer effective in General WG Chat

I was scheduled for my first Evusheld treatment this Thursday. Hopefully, they will develop something else to help protect us.

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3 replies | 66 view(s)
01-30-2023, 06:25 AM

John S replied to a thread Evusheld is no longer effective in General WG Chat

Masking, hand washing and social distance. They are not recommending drinking bleach…..

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3 replies | 66 view(s)
01-30-2023, 04:49 AM

drz replied to a thread Evusheld is no longer effective in General WG Chat

Do is there any recommendations for us if Evusheld won't help us anymore?

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3 replies | 66 view(s)
01-28-2023, 11:07 PM

John S started a thread Evusheld is no longer effective in General WG Chat

CDC urges people with weak immune systems to take extra precautions after Covid subvariants knock out Evusheld The CDC urged people with weak immune...

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3 replies | 66 view(s)
01-27-2023, 12:33 PM

Pete replied to a thread Evusheld in Medication

This just in … https://www.cnn.com/2023/01/26/health/evusheld-covid-fda-eua-revision/index.htmlWith rise of new coronavirus variants, FDA halts...

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19 replies | 1513 view(s)
01-27-2023, 12:16 PM

drz replied to a thread Kidneys Improved Big Time! in Renal: Dialysis & Transplant

I found my kidney biopsy to be a rather non event and actually slept through most of it. If the doctor has a lot of experience doing them it should...

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3 replies | 102 view(s)
01-27-2023, 09:21 AM

Adelie replied to a thread New diagnosis in Dec 2022 in New Member Introductions And Stories

Hello Little Sister, thank you very much for that valuable feedback. While I realise everyone can have different experiences, your news is very...

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6 replies | 351 view(s)
01-27-2023, 03:03 AM

little sister replied to a thread Let's talk about "limited" Wegeners... in General WG Chat

I have been grateful for all the new drugs but had not thought about the implications of being the first generation of GPA patients with access to...

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26 replies | 3108 view(s)
01-27-2023, 02:37 AM

little sister replied to a thread New diagnosis in Dec 2022 in New Member Introductions And Stories

I copied and pasted this info about how Rituximab works: "Normally, the immune systemcreates inflammation to protect the body from infections. But,...

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6 replies | 351 view(s)
01-26-2023, 09:56 AM

Chadwyck replied to a thread Kidneys Improved Big Time! in Renal: Dialysis & Transplant

Thanks for the response, drz! I just got home from Rheumatology. Good and bad came out of it. The good thing is that my numbers look better than...

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3 replies | 102 view(s)
01-23-2023, 09:57 PM

drz replied to a thread Kidneys Improved Big Time! in Renal: Dialysis & Transplant

Kidney test results are influenced by things like of level hydration. Often changes in their function are gradual so trends are important but there...

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3 replies | 102 view(s)
01-22-2023, 01:31 PM

Adelie replied to a thread New diagnosis in Dec 2022 in New Member Introductions And Stories

Hello Chadwyck, thank you very much for your response, and good wishes. We are very fortunate to have a kind, empathetic GP and a capable...

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6 replies | 351 view(s)
01-22-2023, 11:52 AM

Chadwyck started a thread Kidneys Improved Big Time! in Renal: Dialysis & Transplant

Hello everyone. I wanted to wait until my eyes stopped bothering me before I made this post. Over the past three days I've had a lot of redness in...

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3 replies | 102 view(s)
01-22-2023, 07:43 AM

Chadwyck replied to a thread Let's talk about "limited" Wegeners... in General WG Chat

JBee, I agree 100%. Every time the disease messes with me, it attacks me in new ways that I've never seen before. Most of my doctors from 2009 used...

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26 replies | 3108 view(s)
01-22-2023, 07:23 AM

Chadwyck replied to a thread New diagnosis in Dec 2022 in New Member Introductions And Stories

Hello Adelie and welcome to the forum. Just reading your post, you said the exact same things I was asking when I got here in 2011 for myself. I'm...

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6 replies | 351 view(s)
01-22-2023, 07:16 AM

Chadwyck replied to a thread Swelling In Ankles & Feet in General WG Chat

Thanks Don. It's been a while since I had several issues at the same time, knowing that I'm still in remission. It made me question it, "am I...

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2 replies | 73 view(s)
01-22-2023, 06:29 AM

Dirty Don replied to a thread Swelling In Ankles & Feet in General WG Chat

Yes, but GPA does not exclude other problems either...make sure with experienced docs. I had roaming pain, but rarely swelling. Best to you.

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2 replies | 73 view(s)
01-21-2023, 11:27 AM

Chadwyck started a thread Swelling In Ankles & Feet in General WG Chat

Happy New Year everybody! Hope you're all doing well. I have a quick question about swelling. For the past few months everything has been fine...

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2 replies | 73 view(s)
01-19-2023, 02:00 AM

John S replied to a thread Nasal crusting and nosebleeds in General WG Chat

I use a nasal rinse every day. My nasal crusting and headaches usually restart around 2 months before my next RTX infusion.

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3 replies | 166 view(s)
01-17-2023, 08:56 AM

Adelie replied to a thread New diagnosis in Dec 2022 in New Member Introductions And Stories

Many thanks for your kind words and helpful explanations Pete. Very glad to hear Rituximab is helping you to lead a normal life. That is so...

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6 replies | 351 view(s)
01-17-2023, 01:20 AM

Pete replied to a thread New diagnosis in Dec 2022 in New Member Introductions And Stories

Hi Adelie Sorry to hear about your mother-in-law. Rituximab is a great drug. I get two doses a year. It allows me to lead a normal life. However,...

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6 replies | 351 view(s)
01-16-2023, 04:31 PM

Adelie started a thread New diagnosis in Dec 2022 in New Member Introductions And Stories

Hello all, so glad to find this forum. I am writing on behalf of my 85 year old mother-in-law who was diagnosed with Granulomatosis GPA in December...

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6 replies | 351 view(s)
01-16-2023, 02:41 PM

Razie replied to a thread Nasal crusting and nosebleeds in General WG Chat

Sorry to hear you're going through this. I have not tried it yet, but my ENT suggested Ponaris Oil. He said to put a drop or two on a Q-Tip and...

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3 replies | 166 view(s)
01-16-2023, 09:26 AM

andrew started a thread Site issues in Website Issues, Feedback and Announcements

Hi all We had an issue with the site yesterday for about 12 hours or so. In the end I had to restore the site to a backup from a few days ago. If...

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0 replies | 105 view(s)
01-12-2023, 07:22 AM

freakyschizogirl replied to a thread Nasal crusting and nosebleeds in General WG Chat

Hi DRZ I don't have a lot to offer in way of advice. But i know that putting coconut oil in my nose helps to break down crusting. I am sorry to...

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3 replies | 166 view(s)
01-10-2023, 06:09 AM

drz started a thread Nasal crusting and nosebleeds in General WG Chat

Nose bleeds are one of my most common residual side effects of GPA even when i am considered in a drug induced remission. Often they happen with...

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3 replies | 166 view(s)
01-10-2023, 03:38 AM

Dallas replied to a thread New here, and new to GPA in New Member Introductions And Stories

Awesome, I appreciate your advice. I live about an hour south of Pittsburgh, so Cleveland wouldn't be a huge lift. It looks like UPMC also has...

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4 replies | 136 view(s)
01-09-2023, 03:36 PM

Pete replied to a thread New here, and new to GPA in New Member Introductions And Stories

I was diagnosed at Ohio State. After about a year of treatment, and a major relapse due to a medication change, I asked my pulmonologist how many...

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4 replies | 136 view(s)
01-09-2023, 12:49 PM

Dallas replied to a thread New here, and new to GPA in New Member Introductions And Stories

I'm not sure she's super familiar with it. I never really asked because I wasn't really expecting things to go the route they did. I honestly was...

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4 replies | 136 view(s)