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I'm way behind on welcoming you to the forum too (been in a hiatus for a while)! Where in Colorado are ya'll located? I'm in the Boulder area...I hope that by now, two months after diagnosis that...

My sympathies to you Alysia and to Phil's family. I haven't been on the forum for a while so was shocked to see this today. Phil was one of the first people to welcome me to the group when I joined...

I've been really pleased with how it's working so far and even happier with the lack of side effects! Thanks for weighing in Phil


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My understanding is that in the case of WG, the goal is to have a CD19 lymphocyte count of zero...which may be why your rheumatologist wants to continue the RTX and that when you are using it for...

My doc's thought is that manifestation of Wegener's was so bad that we can't risk a relapse so using big guns from the beginning...I can definitely see where they are coming from with not knowing...

Hi Lisa! Thanks for the response. It sounds like some imaging of your head would be a good idea. In hindsight I definitely had the sinus symptoms for a long time but what drove me to the doctor was...

I'm starting my first maintenance dose of RTX this week and I'm just curious what type of dosing some have received as I know the research is pretty lacking on the protocols for using interval RTX to...

Hi all,
My rheumatologist has raised the possibility of sending me to Cleveland Clinic for further evaluation and confirmation of the current treatment plan (15 mg prednisone, Methotrexate, and RTX...

It sounds to me as though your facial pain could be something called trigeminal neuralgia...


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I started on 60 mg after completing 3 days of 1000mg Solumedrol and Decadron in the hospital. After a month i dropped to 40 mg and then 30 to 25 to 20 and then flared because the RTX hadn't had...

Thanks annekat. I am a relatively new member and just hadn't gotten around to doing the intro/my story thing...that's a good idea. I'm definitely grateful for the forum because it really has been a...

No...way! Want to write more but have to be at the gym early. I'm actually in the Denver area too and would love to connect with her to see who her doctors are...


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I was finally diagnosed in Nov 2013. I had already had 9 months of joint/tendon involvement and a diagnosis of seronegative rheumatoid arthritis. In retrospect, the first place my Wegener's showed...

Backstory: I have been on Prednisone now for almost a year (at lower doses) because they initially thought I had rheumatoid arthritis but after being diagnosed with Wegener's (severe) in Nov 2013 I...

My rheumatologist is a fan of combining MTX with RTX if it can be tolerated for the purpose of reducing the likelihood of developing antibodies to RTX...I'm still really new to this whole thing but...

I was just diagnosed with WG in November when the mass in my nasopharyx grew very quickly and nastily in my brain which led to two clots - one in the sagittal sinus and one in the jugular vein. I...

Well...just saw the the rheumatologist yesterday and his plan is take me off Bactrim once I'm below 10mg of prednisone (should happen by middle to end of February) because he didn't feel that the...

Hi all,

I'm a newly diagnosed (6 weeks ago) Wegener's patient so I'm on Methotrexate and I've just completed 4 weeks of RTX infusions and am very happily tapering down on my prednisone - down to...

Hi Alysia,

I was just diagnosed with Wegener's in Nov. 2013 and my "final" symptom which led to my diagnosis was progressive hearing loss (followed by horrible headaches, etc.). To make a very...

I had the same brief itchy throat with my first infusion only and then felt fine for the other three - they also ended up giving me 100mg of Solumedrol prior to the infusion. I have been so happy...