Hola! I am new to the forum..

[Palmyra]

My current favorite Mt Peak is named Palmyra Peak, so I thought it fitting for my member name. Will add a pic to my profile later.

My daughter was diagnosed in 2006 at Mayo, Rochester after some reasonable local docs saw a CT chest, did an open lung biopsy, and said, "Holy Cow! We have never seen this. Can you get to Mayo?"

Her VF expert is Ulrich Specks (love that man!),
pred, MTX were not able to obtain remission, so being the superman he is, Specks got insurance approval for Rituxin 4 years ago.

She us having some issues now with opportunistic infections, and finding great local docs. See my recent post on the "Doctor, hospital" section.

A little about me....I am a temporarily retired periodontal hygienist, with an interest in oral medicine. I taught for a few years at the local dental school, and have worked clinically for 25+ years. My husband is a general DDS.

Glad to be here,
Palmyra (Jane)

[Jack]

Welcome to the forum Jane. :)

Is your daughter taking an antibiotic such as co-trimoxazole (Bactrim) to help with the infections? Many of us take antibiotics as a preventative measure and they were very effective in my own case.

[Palmyra]

Thank you for the welcome! Yes, she has been on Bactrim since day one. Her tonsils have been a problem for years, are very dense/scarred and therefore antibiotic unfriendly, and Mayo recommended surgical removal. The sinus infection was fungal (aspergilloma,) and was surgically resected at Mayo. She is home now, and just needs to find a Weg friendly ENT in Austin, TX to do the tonsilectomy. She has not been able to get off Rituxin without experiencing a flare. It has been very difficult to find good local docs in Austin.

[Sangye]

Hi Jane, I read your other post first, and this one answers the question I asked (ie, how long she had been getting rtx).

I hope she can get that tonsil removed soon. Nothing like a chronic infection to beat on the immune system, making her prone to opportunistic infections.

[elephant]

Welcome Jane, thanks for sharing and hope your daughter can move on to another drug to get the Wegeners in remission.

[pberggren1]

Hola, Jane. Como esta usted? Cuantos anos tiene sus hija?

I took a small Spanish course last fall.

Welcome to this site Jane. It is good to hear that you are seeing Dr. Specks. He is one of the best.

[Palmyra]

Thank you for the welcome....I am frequently a lurker, but will try to contribute when I feel my input will be of benefit. So close to Mexico, and I have a solid vocabulary of maybe 25 words of Spanish! I really need to learn. And yes, I agree, Dr Specks is top notch, and has been a real life saver for my daughter.

Best wishes,
Jane, Mom of Ali

[pberggren1]

Hi Jane,

I will stick to English. Please lurk often and contribute often as well. You never know - maybe something that is trivial to you might be helpfull to someone else.

Buenas Nochas