Wegener's patient about to face the music

[lawstudent2010]

Hi, I'd like to keep my identity anonymous for safety reasons. But rest assured, I am in fact, a Wegener's patient.

I was diagnosed with Wegener's when I was 16 and a half. After hospitalization and near death, the doctors were able to diagnose my disease and give me the appropriate treatment for it. I started off with Cytoxan and prednisone. I was placed off of cytoxan and onto methotrexate in about 5 months and the prednisone came off after about a year and a half after I started it. A month before I was to turn 19, the disease flared up again and the doctor put me on Cytoxan and prednisone again and after 6 months, the doctor switched gradually over to cellcept. I took cellcept about 2 and a half years and prednisone for about almost 3 years when I started it the second time. Two days after my 22nd birthday, the doctor removed all medicine and for the next two years, I've been living healthy.

However, a few months ago, I felt weak and felt like another flare was happening. Over the last few months, the doctor's been monitoring my kidney function as well as my ANCA. I am to call him next week about the lab test results.

As positive as I'd like to be, I feel like I will have to face the music and start the treatment all over again. I need some inspiration as to how I will get through treatment this time and hopefully live a normal life. I honestly believed that once the medicine came off, it would stay off for a long time and I'm feeling scared about having to go through treatment once again. Hopefully, your successful Wegener's stories will be able to inspire me to fight through this battle and be as successful as the last time.

[elephant]

Welcome lawstudent and are you a Law student? Sounds like your being carefully monitored. What were your beginning symptoms when you were diagnosed with Wegeners disease? Do you have a wegeners specialist?

[lawstudent2010]

I am in fact a third year law student going to school in Washington D.C. My starting symptoms were pain and great difficulty in walking and fluid filled lungs. I have a rheumatologist that I go to.

[elephant]

Keep yourself educated about WG because it is really sneaky disease. I'm sure you already look up the Vasculitis Foundation. In the last few months we lost two WG friends on this forum. To my knowledge...someone correct me if I am wrong, they did not have a Rheumatologist that specialized in Wegeners Disease. Usually these doctors have seen 100's of WG patients.
You are too young and have a full life to live. Ok, I am done nagging.
How often do you get labs?

[JanW]

Welcome lawstudent: I just returned from the Vasculitis Foundation's patient symposium, where several experts stressed the average relapse time is around two years. Certainly many people can go years (decades) longer than that, and others completely relapse within a few months of stopping immunosuppressant. I have the same question as elephant: how often do you get your labs done? And if you have been feeling poorly for a few months, has your doctor put you on meds? It's possible that you may be able to go on an immunosuppressant, such as mtx, and avoid the prednisone, if your case isn't severe and your doc doesn't feel the need to get the inflammation down rapidly. It is also possible that you doc may want you to try rituximab, which studies have shown is effective in the treatment of relapses.

The good news is, if you want to get to a major Vasculitis Center, the closest one is Johns Hopkins, which is less than two hours away from you. In any case, I hope that as a young person, you are seeing someone who has done many, many WG patients because you will be living with this disease for a long time, and therefore every decision about medication, imaging (e.g. exposure to radiation), needs to be made in the context of the fact that have decades of life left and the side effects of every procedure can have impacts going forward. As one simple example, I assume that you have had a bone scan because of your long term exposure to prednisone. I am 45 and have pred induced osteoperosis. My doctor will only image my bones every few years (I'm on fosamax for them) because if you assume I have as long left as I have lived so far, he needs to think about a lifetime of radiation exposure. His thought process would be different for a 70 year old.

[Sangye]

Hi Lawstudent, welcome to our group. I live in the DC suburbs and go to JHU for all my care. You're incredibly fortunate to be in JHU's backyard.

I assume you don't go there, and I'll warn you now: I'm a major nag about having a Wegs specialist at a major center. I don't let up about this nagging, either. This year we've lost 3 members due to Wegs-- each one because they didn't have a Wegs specialist. I wouldn't even be alive without them. Just in this last month I would have lost all my hearing in one ear and been permanently in a state of vertigo and unsteadiness without them.

So. Here's their info to get established as a patient. Today is the perfect day to call. Don't make me have to tell you again.
Appointments at the Johns Hopkins Vasculitis Center

[lawstudent2010]

Just so you guys know, I get my bloodwork about once a month. Although the doctor hasn't officially declared a flare, the results that I just saw (the bleeding in the kidney) suggests that he's giving treatment soon. I know I have to take treatment and will do so, but I'm looking to find a way to stay in remission for as long as I can.

[Jack]

The sooner the treatment starts, the less intense it will need to be and the faster it will act. I'm surprised that your doctor did not act at the very first sign that anything was wrong.
Delays can cause major damage very quickly - I went from "Not Well" to kidney failure in the space of two weeks and am now living with a transplant. That was before I was under the care of a Vasculitis specialist.

[JanW]

Welcome back, Jack!

Listen to what this man says, lawstudent -- he learned what he speaks of the hard way.

I wish that researchers have figured out the key to staying in remission longer than the average, but based on everything that I heard at the conference, it's pretty random. They have not unlocked the secret to why some people remain in remission for decades and others do not.

[elephant]

They need to do a backround check( where they live, what they ate, how long were they on meds, any severe stress, exposure to chemicals, ect) on these people who stayed in remission for over 10 years.....just kidding...