Y’all settle in and I’ll make this quick… hopefully

Newbie…. I don’t know that I have ever felt more like a newbie about anything in my life. Ironically, here I am truly a humbled newbie. Go figure.

A small bit about myself, a prelude if you will:
I am an avid imaginative wildly outlandish in the most abused way possible to the tune that all things indeed are possible in as many as six things prior to tea. — I’m a huge Alice in Wonderland fan and use it to help make sense of this life.
Otherwise, I am a 37 year old mother of two who are 19 and 20. I’ve been happily married to my best friend for 12 years and hope to see so many more. I garden (life makes sense with my hands in the dirt), bake, cook, exceptional housewife on my good days, and a pain on my worst of them. Balance,right?

For a few years I had recurring sinus infections that would take months and multiple prescriptions of steroids and Levaquin to get to go away. Then in October 2020, I noticed a whistle sound while I was breathing. There was a hole in my septum. A tiny small speck. I went to my GP who sent me to a local ENT specialist.. which at this point the hole went from tiny to about 2-3 cms. The specialist thought it best to see a bigger and better specialist at MUSC. I thought he was being a jerk and passing me off. I was wrong. Best ENT I’ve ever met and he helped me quickly find out that GPA was the root cause. He then got me into my Rheumy who is also at MUSC. I’m up to 6-7 specialist all working on me with this or that.

So far, treatment started with Methotrexate and prednisone back in February 2021. I worked my way up to 25MTX and down to 5mg of prednisone. I started injection method a few months back as my symptoms were not improving. Injections- not the coolest of things. Rheumy wanted to try Immuran. I was hesitant and she was as well since we started thinking I also had Rheumatoid Arthritis ( big thanks to Jack I think- the member who used to say just because you have one thing doesn’t mean you can’t have more issues). So the plan now is Rituxin 1000mg 2- 2 wks apart every 6 months for the next year. That’s where I am in the medical process from that perspective.

I’ve learned a lot from many of you on here. I have felt supported and comforted when none of you knew it. Thank you for all of those that step up and share and support. It helps seeing the Hope. I have a lot of it. [emoji4]

Love and light,
Ashley


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^{​Sounds like you're in good hands. MUSC= Medical University of South Carolina?}

Pete, you are correct Medical University of South Carolina. I am here in Columbia, SC. MUSC has been excellent with their care.


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You are very fortunate if the only damage you got from the GPA is in your septum. Good thing you finally got diagnosed correctly and are getting appropriate treatment.

I love the reference to our old sage -- Jack and his wisdom is still shared today!

DRZ, I’ve read many of your posts as well and have learned a great deal. I appreciate it.

The septum was the beginning of it. It is now at 7cm. My sinuses are basically a train wreck. However, by comparison I feel very fortunate. My symptoms progressed fast and it all has been a whirlwind.


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Biggest question to all:
How careful are we all needing to be while on Rituxin? I am a homemaker and am fortunate in that regard. However with the holidays upcoming we have one or two who would normally come stay. I am concerned this may not be the safest route yet… thoughts?


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Talk to your doctor. I’m vaccinated, but can’t take a booster until late February - a month before my next rtx. Over the holidays, our entire extended family will have been vaccinated, so it’s off to Momaw’s house. We still mask up when we’re in indoor public places.

Pete and DRZ - so nice to “see you” both - still sharing your wisdom and kindness. Ashley - thank you for sharing your story and so glad that you are in good hands. This fool disease is shifty and we have to keep on top of things best we can. We gotta try to “keep on keepin on”

Update: I’m about to get the evushield…spell check that one for me. Then my next round of Rituxan (#2 treatment) is next week. Since this all started I have since been diagnosed with rheumatoid Arthritis and fibromyalgia. It’s a roller coaster sometimes.


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