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I'm supposed to be taking my Bactrim DS religiously (part of the Dr. Villa Forte care plan, glad to hear she doesn't pull you off of it before/after infusion, she doesn't manage my infusions so I...

Had my RTX infusion on last Wednesday. Went well. I got my lab draw before the infusion and got my results on Friday. All good except for a +2 on leukocytes (in urine). That smells like a UTI: I...

Does anyone have any concerns WRT the rate of FDA approval of these vaccines? No prior vaccines for any of the coronaviruses. New strains popping up every day. Will the vaccine handle the new...

Masha,

This is the study: https://clinicaltrials.gov/ct2/show/NCT00748644

The readers digest version: ...

The term used by my financial counselor was "I was grandfathered in because I was part of the old system" I was fully ready in my mind to drop down to 500mg.

Has anyone pursued getting Genotech...

Dr. Villa Forte (who I consult with mostly remotely) told me she expected the insurance companies to discontinue allowing 1000mg doses after one of the recent trials showed 500mg every 6 months was...

Hey,

If I could pile on to the ocular pressure discussion, I'm using Alphagan P and it has my pressure down in the mid-teens. One drop a day. It is liquid gold (very expensive), but thankfully...

Masha/Dr. Z,

That awkward moment when you think you are making a strong point and you look up and realized you were responding to an original post from June 2019.

While many of us are partial to the Cleveland Clinic, US News and World Report consistently ranks Johns Hopkins as the best hospital in the US for Rheumatology. Dr. Philip Seo is considered probably...

45 pound weight loss on Pred is incredible. I did the opposite: I gained 45 pounds. I want to take it off, but obviously not enough to put in the work. Hearing it is possible is enough to push me...

Masha: Just hoping for the best on this. Any sort of snake oil that will work. The Pred is tearing me up and I'd personally love an alternative.

Did they mention cost and/or insurance "buy in"...

Masha,

I'm sure you saw this. FDA application has moved from status "submitted" to "accepted" on AVACOPAN as a NDA (New Drug Application) by ChemoCentryx. FDA sets PDUFA (drug approval) goal...

The MAINRITSAN study was used to expand FDA approval for using Rituxan for remission maintenance. The dosage involved was 500mg every 6 months (I'm currently getting 1g every 6 months myself). In...

I am sorry to hear about your situation but will remain hopeful that you get the needed treatment and recover as much as possible. You have validated my worst fears of this pandemic situation: when...

I'm with seied on your prednisone usage. It seems a bit excessive. I would think with the trouble you are having you'd be a good candidate for the plasma exchange therapy, bring that up with your...

Gary: what was the basis for your GPA diagnosis (ANCA-C, PR3, Biopsy)? Did any of the medications help your lungs? Do you have kidney involvement? What are your inflammation numbers like now? ...

Gotta be honest bro I'm floored by your diagnosis. I've been told greater than 95% chance of GPA with positive C-ANCA/PR3, so I never questioned my diagnosis. I had a "negative" Kidney biopsy...

In exchange for my life, I'd be more than willing to help Dr. Fauci with his fastball.

https://www.youtube.com/watch?v=0Rr9XC3hNGg

Interesting diagnosis on the Kidney biopsy. Was your PR3 also positive (PR3 is part of the ANCA panel for both Labcorp and Quest) in addition to your ANCA (assuming ANCA-C as opposed to ANCA-P)?
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Masha: I believe its one out of 33,000 in the general public in the US get GPA (3 per 100,000 IS usually what's cited). To give you some perspective: the odds of dying in a car crash are 1 in 103. ...

My disease presented with joint pain, fatigue, loss of appetite, night sweats, and alveolar hemorrhage revealed via coughing up blood and bronchoscopy and ground glass opacity in the CT (the same...

Congratulations on 10 years Dr. Z. Keep letting us know how you are doing. I hope you have an Oximeter handy: it is so necessary for all of us to monitor our SPO2. I feel so fortunate given this...

Alysia: I hope from your last post that the RTX is doing its job. It is understandable that the instability of this world is making you anxious, but if I could give you the slightest bit of advice,...

Hey guys: just wanted to give you an update on Rituxan Infusions in the COVID-19 Universe (just completed my infusion today)

After the recommendation of the incomparable Dr. Villa Forte of the...

I must say you are quite the inspiration. I hope your family realizes and appreciates how tough you are: tougher than a $2.00 steak (I hear this metaphor is popular in Texas). Many blessings to...