Hello from Buffalo, NY

[csjknits]

My name is Corrie and I was recently diagnosed with Wegener's (or possibly MPA, depending on doctor). I have had recurring ear issues (chronic ear infections in one ear with hearing loss, multiple mastoidectomies, etc and recently developing ear issues in the other) and more recently sinus infections. This April, in a span of days I had joint pain and swelling in my legs, flank pain and breathing issues, and uveitis, all of which I saw doctors for. By the weekend I was nauseous and unable to eat or get out of bed. I went straight to the ER where I found out I was in acute renal failure. By the next day my lungs were hemhorraging. The nephrologist at the hospital diagnosed me immediately and began treatment. I stayed in the hospital for two weeks and am now home on a prednisone/cytoxan regimen.

I'm trying to learn as much as I can while being patient and also trying to heal. As a newbie to this all it is quite scary!

I've read this site over the last few days and I'm so grateful to have found people going through the same thing.

I look forward to learning more from all of you!

[Mas78]

Corrie, welcome to the group.
I'm glad that you have gotten diagnosed. Now that you have started treatment you will start feeling better. I was on cytoxan also mainly due to kidney involvement. I recovered well and you should also.
I didn't see you mention anything about having a rheumologist. If you aren't seeing one I would ask to get one in your group of doctors as they are the ones that generally take care of Wegeners.

Also be sure to all questions you may have as some one will be able to relate and offer advice.

[csjknits]

Thanks! I do have a rheumatologist. He is the one who thinks it is MPA. Nephrologist says GPA. Tested ANCA positive and also had kidney biopsy. It's not much of a team effort but I do think they both generally agree on treatment. I'm doing the oral cytoxan and am currently on prednisone taper.

[MaxD]

Corrie,

Sorry to welcome you to our very selective club, but here we all are. I was in the same situation as you (minus the kidney involvement) just over a year ago, so I can imagine how scary it must be to feel rotten and then be sucked into the medical-industrial vortex. Do check out the Vasculitis Foundation (Vasculitis Foundation (http://www.vasculitisfoundation.org)) site, plenty of good information and personal stories there. As you will hear from many folks on this site, please do make sure to consult with a vasculitis specialist (you will find them in the foundation's website) - the Cleveland Clinic is one of the most highly reputed centers and it's not too far from you. Your local doctors can work in coordination with them, in fact they will likely be happy to work with them.

Keep reading as much information as you can. Some of it will be scary, but realize that not everyone suffers from the most extreme conditions - as long as the meds work (and there are quite a few) and you keep getting regular checkups even when you get into remission. Many of us on this site are in remission after, in some cases, years of treatment. And some have stayed in remission for many years (decades?) without a flare-up. So take heart and get well! Good luck to you.

[drz]

My name is Corrie and I was recently diagnosed with Wegener's (or possibly MPA, depending on doctor). I have had recurring ear issues (chronic ear infections in one ear with hearing loss, multiple mastoidectomies, etc and recently developing ear issues in the other) and more recently sinus infections. This April, in a span of days I had joint pain and swelling in my legs, flank pain and breathing issues, and uveitis, all of which I saw doctors for. By the weekend I was nauseous and unable to eat or get out of bed. I went straight to the ER where I found out I was in acute renal failure. By the next day my lungs were hemhorraging. The nephrologist at the hospital diagnosed me immediately and began treatment. I stayed in the hospital for two weeks and am now home on a prednisone/cytoxan regimen.

I'm trying to learn as much as I can while being patient and also trying to heal. As a newbie to this all it is quite scary!

I've read this site over the last few days and I'm so grateful to have found people going through the same thing.

I look forward to learning more from all of you!

It sounds all to familiar except some of us took months or years to go through all of it. The treatment plan sounds OK, but consulting with an expert is highly recommended to make your treatment most effective and to avoid unnecessary side effects and complications. The kidney biopsy should confirm the diagnosis if you had Wegs active in your kidneys. It sounds lucky that you were diagnosed fairly quickly and started on proper treatment which should help you feel better and recover more quickly. Best wishes for better health soon.

[annekat]

Welcome, Corrie,

It sounds like you have a good handle on things and are getting good treatment. Getting the initial treatment successfully underway and slowing down disease activity is the most important thing. Later, you'll be able to spend more time getting more expert advice about future treatment plans, etc. I had the same stuff going on as with you except for the kidney involvement, which still could crop up. CTX and pred did well for me in clearing up the lung involvement. The sinus and ear stuff had been going on for a couple years before dx, so some damage in that area was already underway, resulting in hearing loss and erosion of cartilage and bone in my nasal cavity and sinuses. There are some lasting effects of the damage there and in my lungs, but I'm a whole lot better off than I was. I hope your recovery will go smoothly and without much permanent damage. You've found the best place for support and information, and I hope we will get updates. Also, be sure to use the Search function to see past posts on specific issues.

[kaysee]

Welcome to the forum Corrie. You have already received some great advice from the others who posted. I have kidney involvement and my kidney biopsy confirmed the diagnosis that my rhuemy first made based on my labs. Has your rhuemy, who thinks it's MPA, seen the kidney biopsy? It's important to have a correct diagnosis because the two (GPA or MPA) respond a little differently to treatment. Find a rhuemy who knows the differences between the two. Good luck.

[csjknits]

Thank you, everybody.
I do think the rheumatologist saw the biopsy. He is very well aware of treatment options but I'm not feeling that my treatment is very "personalized"--I get the sense he treats all cases the same. I am looking into options. I actually think my nephrologist has a better handle on my case but I don't know how much experience he has dealing with the systemic issues. More things to discuss with both as I keep following up. I will also look into Cleveland clinic as it's only a few hours from where I live.
Again, thanks. I've learned so much in the few weeks I've been reading these boards. And I see how much I have to learn! B cells, T cells, tests to see what meds I could handle--these things have never come up at the doctor!

[Pete]

My advice is to get an appointment at Cleveland Clinic ASAP. I recommend either Dr Alexandra Villa Forte (I see her and she takes excellent care of me) or Dr Carol Langford (who treats some folks on here as well). These two docs see nothing but Vasculitis patients. These are two of the experts!!