Diagnosed in August 2010

[TommyG]

Thanks, everyone, for all the advice and help. I did take your advice and met with Sharon Chung at UCSF for a consultation. I think she's a great resource for those of us near San Francisco. She agreed with a lot of you that my Wegener's wasn't under control, and she thought Rituxan was my best option (which my rheumatologist and I also thought). I saw her Wednesday and had my first Rituxan infusion yesterday, Friday. So far, so good in terms of side effects. Thanks again...just wanted to update everybody. Hope you are all doing well. --TommyG

[dunkie2202]

Great news Tommy, I had a feeling that your Weg's wasn't behaving well. Glad you found a Weg's Dr to look after you.

[elephant]

Glad you are getting good treatment TommyG!

[vdub]

I am just returning from the U of Utah Vasc Cntr in SLC. They are the western most VC in the country. It was a great experience and well worth the trip. I'll be in Livermore for the next 2 or 3 weeks (beginning Wednesday, 16), if you want to get together....

Good luck!

[Gator]

Hi,

First, thank you. I've been learning much from this support group. This forum has helped me an awful lot in dealing with Wegener's. It has also made a big difference in my knowledge of the many complexities of my condition.

My story: I started getting symptoms in Jan. 2010 (sinus congestion/nose pain/bleeding, headaches). Three different doctors told me that I had a sinus infection and gave me antibiotics. I always knew there was more to it than that but the doctors didn't seem to believe me. Finally, I agreed to nasal surgery when the headaches became overwhelming. My ENT couldn't do the planned surgery because the tissue was so damaged. However he did a nasal biopsy in early August which came back positive for Wegener's. Had two monthly cytoxan infusions and then switched to oral cytoxan (150). Have also been on high-dose pred for months; my ENT moved me up to 100 when I developed considerable hearing loss (tube did not help) and Bell's palsy in Oct. Have since tapered down to 60.

Problem now: I feel lousy. Initially I had very limited lung involvement (couldn't feel too much impairment, but CT showed small lesions). Now I am coughing and short of breath (e.g., cannot blow up a balloon...I was always in great shape before this). CT from last month still looked fairly good but lung function test was worse. Very low energy, still getting headaches (though not as bad) , some nose pain has returned. Also have gained weight, lost muscle, and am having some of the other pred symptoms. I know continuing long-term pred is a bad idea but every time I go much lower than 60 I feel worse.

Rheum and I are trying to decide: do symptoms mean (1) I am not in remission, cytoxan is not working, should switch to rituxan? (2) these are side effects of pred, pred tapering, and/or cytoxan, so I might be in remission and could switch to methotrexate? Or something else? It is hard to tell if I'm flaring or if the high doses of pred and the pain meds masked some of the damage that I'm only seeing as I come off the pred. I'm off the pain meds now. (I like my rheum a lot...she is not a WG specialist but does have experience in it and several other WG patients, and she consults with the top guys in the field.)

Any thoughts, similar experiences by others, etc., welcome. Once again, thanks for all the info and support on this site, it has been a lifesaver.

TommyG

I won't say I had an identical experience but mine was similar and I am in the exact same time frame. Let me know if I can help.