Diagnosed in Decemember 2009

[Sangye]

Lightwarrior, Avascular necrosis (AVN) of the femoral heads typically happens after long periods on pred. If you're having hip pain, it's most likely Wegs.

[Lightwarrior]

Thanks, this isn't nice and neat and predictable. I train ICU nurses to anticipate what is coming next so they can avoid it. this is frustrating. The universe has always given me what I need, but has a wicked sense of humor, I suspect I am having to learn that everything is not predictable. Maybe I have a book in me? insteaed of Zen and the Art of Motor Cycle Maintenance I could call it Zen and the Art of living with WG? (LOL)

[Sangye]

Yes, with the exception of 3 or 4 other very rare AI diseases, I don't know of any disease quite like Wegs. Symptoms are all over the map (even within the same person), tests are fairly useless to evaluate progression or response to treatment, almost impossible to give any prognosis other than "We hope if we do ___ then you will respond like ____ in ___ amt of time." Even ESR and CRP results can be misleading. Mine don't elevate until I'm headed for the ICU.

Wegs is all about uncertainty. The faster you can get comfortable with that, the better. I've made lots of progress but still find myself crying my eyes out a lot lately with frustration. This is why I'm so determined to get every Weggie to a Wegs doc. Even with the best ones in the world, the uncertainty factor is huge.

[elephant]

Lightwarrior, the good thing is that you have a wealth of knowledge in the medical feild! So you will be able to pick things up quicker. Hope you find a WG soon. Keep us posted on your hip.

[Jack]

I will need to be on the Cytoxan for about a year

This article suggests that 3 - 6 months of treatment with cytoxan should be the maximum. Contributors include my own Rheumy, Prof. P. Bacon.
The reference at the bottom of the page might be of interest too. It suggests that Statins might be a useful area of research.

[Lightwarrior]

Thanks Jack, I needed this. I downloaded and saved and am forwarding to my Docs, I am going to take your advice and that of other smart people on this forum and look at the Doc consults on the Vasculitis site. Flying to a center is not an option right now.

[Sangye]

I looked at your initial post and saw that we haven't answered some of your questions. You asked how immune-compromised you'll be. You won't be severely neutropenic, but you will certainly be highly susceptible to infections. Wegs can mimic infection (and vice-versa), making it much harder to treat in time.

I don't think working in a unit is a good idea while on cytoxan. Many Weggies die from infections rather than Wegs. If you do get an infection they can't stop giving you the ctx and pred, even though both make it extremely difficult to fight off an infection. Viral infections are a big problem, of course. Stress is also a major trigger for Wegs, making an ICU environment one of the least desirable for getting well. This is all assuming you have the strength to work, too. Those are pretty tough drugs. The first couple weeks or so you usually just feel relief because the pain is gone. Then the side effects start to roll in.

It's best if you can take a few months off and let the treatment work.

[MCC]

Hi, I've recently been diagnosed also- just started treatment 3 weeks ago so I don't know a great deal but just thought I'd answer from how much treatment is panning out.

I took three weeks off with illness before diagnosis but I am now back at work full time (office job) and am just going to regular hospital appointments and fitting it around my hours.
I've had two doses of cyclophosamide so far and on the second dose I was told I now need to monitor my temperature to check I am not becoming unwell and I have a letter about neutropenia to carry around. I have been told that the danger of getting unwell from being immunosuppressed is not too great- other people with colds etc are not really a danger, but I should stay away from people with anything more serious such as measles/flu etc. I also have so many other drugs in addition to prednisone to combat side effects and infection.

[RCOSSIO]

First welcome aboard...I unfortunately was on Cytoxan for one year and have been on Cellcept for 8 months now. As far as getting back to work, I had opened my business one week after leaving the hospital. So as far as going back to work it all depends on how you feel. Yes I was still tired and a bit lethargic, but manage to pull through within 3 weeks. Anyway good luck!

[elephant]

Richard, how is the cellcept working for you. I started cellcept March 2009. I'm on 2000mg a day. Are you off Prednisone?