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Thread: Wegener's and Goodpasture's Syndrome

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    I am attending the symposium in Long Beach. My mom definitely has both. ANCA positive and anti-GBM antibodies over 100 before plasmapheresis. It is rare to have both, but there are other documented cases.

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    She has the crusty (and sometimes bloody) nose, weakness, low sat rate (on 3 liters of oxygen full-time), kidney failure (on dialysis) and a few other symptoms. She had 13 sessions of plasmapheresis for the Goodpasture's and the 500 mg of steroids for 3 days, slowly tapered down to now 10 mg. Cytoxan (cyclophosphamide) screwed up her platelets, so they have tried Rituxan (rituximab) as well as Cellcept (mycophenolate mofetil). The doctors feared the Cellcept was the cause of constant diarrhea, so she's currently just on the Rituxan infusion she received a few months ago.

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    When I was admitted to the hospital , they thought that I had both Wegners and Good pastures and was getting treated for both while on life support. I had 10 treatments of plasmapheresis and the pred and the cytox for the Wegners. Was told how rare it was to have both of them after I had recovered enough to understand what had happen to me. They said that if I had had both that they would have wanted to do a case study on me.

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    Where were you hospitalized? Did they ultimately determine that you did not have Goodpasture's? Did you have anti-GBM antibodies?

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    Thanks for the recommendation, Sangye. As soon as she was diagnosed, we quickly researched both her diseases and knew that Johns Hopkins was the place to go, but her doctors said that she needed to start plasmapheresis for the Goodpasture's immediately and they could get her into the Richmond hospital that day (her local hospital does not do that procedure). Thanks for urging us to still pursue Johns Hopkins. She has an appointment next month. And I hope to see Dr. Seo at the symposium.

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    Hi Tulip - YES!!! Boy am I glad I found your message . . . beginning to think I was the only one!!! Only recently diagnosed too.

    Following a six week stay in hospital I was referred to Kings College in London. Kidney biopsy confirmed the WG and two days later (following further lab tests) was called back to be told I had a positive result for Anti GMB disease - this has the Consultant very excited as apparently both are extremely rare!

    They immediately commenced 5 sessions of plasma exchange, which although brought the Goodpastures levels down, was not enough, so another 5 sessions were recommended. As of Monday, this seems to have done the trick, but due to the lack of clinical studies, no one seems to be able to tell me if this will be a one off, or if levels can rise again and the treatment will need repeated somewhere down the line?

    How is your mum doing now - hope she is feeling well. Any scraps of info you have managed to gather would be really gratefully received.

    Jules

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    It has now been a year since her diagnosis. The first few months were very rough, as they tried to get both the Wegener's and Goodpasture's under control. The treatments are very similar (the are now studies using plasmapheresis for WG too). The 14 plasmapheresis treatments brought her anti-gbm level down from over 100 when first diagnoses to the current level of high single-digits/low teens. The doctors here don't have a lot of experience with Goodpasture's and no experience with the dual diagnosis, but they believe the Goodpasture's did its dirty work (it definitely helped destroy her kidney function very quickly and permanently) and probably won't return. After about 9 months, she had a couple "good months" where she was off oxygen and walking short distances in the house without a walker (even made it up a flight of stairs twice). Unfortunately, she had a flare in December 2010, followed by some infections, so she is kind of starting from scratch again. Please let us know how you do, Jules.

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    Hi Tulip

    Similar anti-gbm levels to your mum - exactly 100 on diagnosis, but following the 10 sessions has settled to single digits. The consultants are a little baffled as, being double ANCA/GBM positive, they would have expected my renal function to be far more impaired than it is . . . I count myself very lucky! Your comment about making it up the stairs made me smile. . .I can so relate to that. . .I'm puffing like I've climbed Mt Everest when I reach upstairs in my house!

    Ctx is proving problematic to my lymphocyte count and docs concerned about my risk of infection at the moment, but otherwise I'm doing ok! More frustrating not being able to get any definitive answers to questions, but the lack of case studies on the combination means the docs simply don't know and it seems very much to be a 'try it and see' approach at the moment.

    Hope your mum makes steady progress and remain 'flare-free'. Jules

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