Diagnosed in August 2010

**TommyG** · 01-24-2011, 02:05 PM

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

**drz** · 01-24-2011, 02:10 PM

Originally Posted by TommyG

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 would ask her about a referral to one of those top experts who could do a consult. It should make both of you feel better and may give you some direction on how to best proceed.

**dunkie2202** · 01-24-2011, 03:06 PM

Hey TommyG, Sorry to here the trouble your going through. I too was dx in August, I'v had 6 infusions of cytoxin, 5 plasma exchange & 4 dialysis. I'm going onto Imuran in two weeks & I'm down to 10mg pred.... I am def in remission. You are not by the sounds of it. You should seek another Weg Dr's opinion. Where are you from???? Best of luck Tommy.

**elephant** · 01-25-2011, 01:25 AM

Welcome TommyG, I agree with the above posts. You really need to see a Wegeners specialist because they would know if you are in remission or not. Staying on prednisone is a sign that your wegeners is active and that the cytoxan is probably not working for you. Where do you live? North, south, east, west, north east....ect So we can help you get to a specialist quick.

**JanW** · 01-25-2011, 01:37 AM

I agree with all, TommyG -- researchers are now suggesting that remission in a 'typical' case can be achieved within six months, and that pred can be tapered within 3-6. Of course there are many here that are different from that, but I would suggest that being on a such a high dose of pred for so long means that the main engine (ctx) isn't working efficiently/properly for you.

**Brooke** · 01-25-2011, 02:34 AM

Welcome to the group and sorry you are feeling so lousy. I am sure most people on here, like some already have, will tell you to see a Wegener's Specialist. Feel free to ask questions or vent! You will find lots of great advice.

**Sangye** · 01-25-2011, 03:42 AM

Hi TommyG, welcome to the group. Yup, I agree with everyone. Not only are you probably not in remission but it sounds like you could have very active disease. Please get a Wegs doc involved asap. Even though you may like your local doc and she has seen a few Weggies, she is way out of her league. Red flag #1: She can't differentiate pred side effects from active disease. Though it can be difficult, the Wegs docs know how to untangle that mess because they treat hundreds of Weggies and see it every day. Red flag #2: Your ENT is way overtreating your hearing loss with 100mg pred. I had acute, total hearing loss in one ear last year and my Wegs ENT put me on 60mg pred for 2 weeks. That was enough to restore my hearing. You might need 60mg for longer than 2 weeks, but not months.

It sounds like your docs are making the classic mistake: over-treating with pred instead of using the right immunosuppressant to gain control of the Wegs. This is damaging to your body (short-term and long-term) and allows the Wegs to remain active and dangerous.

**TommyG** · 01-25-2011, 08:33 AM

Hi everyone, thanks so much for all your responses. Just got back from an appt with my ENT, and he thinks my nose & ear still have active problems. I'm leaning toward switching to Rituxan (hopefully my insurance will cover it). I live in the San Francisco Bay area, specifically, San Jose. From what I gather from the forum, all the Wegs specialists are on the other side of the country. Any ideas on where it would be best to go to see a specialist? Only other question till I get to see my doctor--I'm back to 60 pred and feeling better since I went up from 52.5, but should I keep trying to taper down slowly?

Thanks again. I hope you are all doing well, and your feedback has been a big help to me.

**Sangye** · 01-25-2011, 08:44 AM

Sharon Chung is at UCSF. She's one of the newer VF docs. Her info, from the VF website:
CHUNG, SHARON, M.D., M.A.S.
Assistant Adjunct Professor
UCSF, Division of Rheumatology
374 Parnassus Ave., Box 0500
San Francisco, CA 94143-0500
Phone: 415-514-1673
Fax: 415-476-9370

Since UCSF doesn't have a Vasculitis Center, it makes it a bit tricky to get other specialists involved (eg ENT) who really know Wegs. But Dr Chung will know where to send you.

You cannot make the decision about rituximab by yourself. That's why you need a Wegs specialist. Also, you definitely should not adjust your pred dosage yourself (up or down) without your doc's guidance. You can cause serious problems, including adrenal failure (fatal in 24 hrs) or cause the Wegs to go wild. I wish you were closer to a major center, but I'm glad at least you're right by a Wegs doc.