Daughter recently diagnosed-see specialist in 3 days

[JanW]

Indeed they are. If it's any comfort, I was diagnosed with WG a year ago tomorrow, and I didn't start medical treatment of it until March, because they thought I was having a bad reaction to a test dose of mtx (that turned out to be wrong) and they didn't want to jeopardize impending surgery (I had a subglottic stenosis fixed last March). So, I went two months between diagnosis and even taking a pill for WG except for a one week test dose (no pred). All this is to say that even not beginning drug treatment immediately doesn't mean that you daughter's case is necessarily growing worse.

[Palmyra]

Thanks so much for your encouragement, I was curious -is your daughter doing the 4 or 2 treatments in a round of the rtx? I read w/ interest when Sangye reported on those 2 protocols. I also wondered when she started @ Mayo. Our daughter is starting @ Duke but we are working on getting her to Cl. Cl. When you say she is due for another rd of rtx do you mean she has gone out of remission? Sorry so many questions-I just am so concerned abt the treatment decision that will be made tomorrow for our daughter & I want to be as informed as I can be...It sounds as though your daughter has done well-has she been on anything else? Thanks !

Joy, my daughter did 4 rounds of Rituxin for induction/initial therapy (along with pred) and is now on no meds other than bactrumDS 3 X's weekly. Her initial appointment was at Mayo (Dr Ulrich Specks,) after her Austin, TX docs realized this condition would be better served at a facility that had expertise in the area. (She also has a history of Crohn's disease.)

She has been treated with Rituxin a total of 3 times in her 4 year history of Weg. Per Dr Specks, it is now recommended that AFTER initial induction treatment (4 infusions of RTX, usually one week apart,) that subsequent treatment is 2 infusions (at one or two week intervals). To my understanding, all of this has evolved within the previous 5 years or so, and will vary slightly from major center to major center. Each of the experts seems to have a slightly different spin on how to treat this disease, and it is highly variable on the individual being treated.

Maintenance therapy guidelines are not really in ink at this time. It has only been within the past year that RTX has been shown (in the RAVE trial,) to be of similar efficacy to CYX as an induction treatment. We had heard discouraging reports regarding harvesting eggs, and with Rituxin's early promise, we chose to go that route rather than start with cytoxin.

My daughter has had problems with secondary infections....many on this site have similar problems due to immunosuppresion, when treated with any immunosuppressive drug (she is on Bactrum, but her infections have been fungal and by the odd bacterium that is not addressed by bactrum)

And yes, she currently uses Rituxin after about a 9-12 month interval, as when her B cells repopulate she does tend to flare. She is looking at other maintenance drugs (the only available to her might be cell cept, as she cannot take imuran) to try to prolong that remission period without having to use Rituxin with frequency.

Good luck to you and your daughter! She is lucky to have a skilled advocate looking out for her

[drz]

Differences in treatment recommendations can be stressful. That is one of he advantages of dealing with a large treatment team under one roof. They may have similar differences in assessment and recommendations but they thresh it out among themselves so you only get one recommendation and avoid the stress of knowing how it was decided. Therapeutic rapport is often important variable in efficacy of treatment so it might work to allow your daughter considerable latitude in how she wants to pursue treatment. Good luck. At least info so far suggests it is not urgent or life threatening at this point so you should be able to get it all worked out with something that makes you comfortable. Good luck!

[Joy]

I want to thank all of you for your posts-they help so much & I feel your support & it means alot. We are in a strange place right now as the doctors do not think that the weg diag was correct. They are now leaning towards sarcoidosis. This was the other poss. diag. back b/f her lung biopsy. Her ANCA was never positive but her pulm. split the anca(back in Oct) & did 2 more detailed tests w/ one showing a pos. indicator for WG. She had her 3rd CT of her lungs on Fri. & they see nothing there anymore. Amazing!.All other tests are still neg. Her steroids have been tapered since Dec. 21 & she is now down from 60 to 20. I wondered if any of you know where to go for sarcoid? I have seen that poss. Mayo(MN) might handle S & WG. She plans to go her spring break & wants to go 1 place that is a center of excellence for both. It is hard to think in a different direction as I always felt that wg fit her symptoms best due to her sinus issues & neck pain along w/ the lung granulomas. We would appreciate anything y'all know abt. sarcoidosis, have you heard of this confused diag happening to anyone else? She is feeling so much better but still gets winded on stairs or w/ alot of walking. She does not feel back to normal & her mucous has increased w/ the tapering of the pred. Sure would appreciate your insights.... Thanks! Joy

[Sangye]

Joy, I suggest you go to a major center and let them evaluate her. Mayo docs get patients with an uncertain dx every day. However, spring break is a long way off. If it were me I wouldn't wait. While it could be sarcoidosis it could still be Wegs and waiting that long is not good.

It's great that her lung CT looks better but lung involvement with Wegs is not always straightforward. The first CT I did showed my lungs completely full of blood. I saw a pulmy the next day and we repeated the CT the day after. My lungs still looked awful but there had been enough improvement that he didn't want to do a bronchoscopy while we waited for labs. I didn't even have a dx, much less any treatment and they looked better.

Also in my 2009 flare, my lungs were bleeding again and I was coughing up big blood clots. It was decreasing every day for a week, and by the time they did a bronchoscopy there was minimal dried blood in my lungs. The JHU rheumys and pulmys who were treating me while hospitalized concluded it couldn't be hemorrhage due to Wegs since it had seemingly resolved itself. They discharged me with a dx of viral bronchitis. Dr Seo found out the next day and was livid. It was clearly Wegs and my lungs would have started hemorrhaging again without treatment.

[Jaha]

Joy,

After having a lung biopsy and 3 places removed from my lung (after about 2mos.) I self referred to a Dr Culver ( a Pulmonologist) at Cleveland Clinic who specializes in sarcoidosis, he sent for my tissue samples and had a team review my case. I have never tested positive to the ANCA but that team was able to pin it down to WG's and then got me in to treatment with a wonderfull Doc there at the clinic. Good Luck!
Jana

[emg]

Joy,
This thread made me cry! First off, your family is in my prayers.
What a lucky girl she is to have you as a mother! I feel so alone not having anyone to talk to, vent toand fam n friends I want to talk to have no knowledge of anything autoimmune....barely know general CBC type lingo. Lol
You are a special kind of woman to not only be with your daughter but also to gain the knowlege to help her and allow her to lay her burdens on u to lighten her load.
She is truley blessed.