New Member

[Bajarel]

Hi everyone,

I am a new member. In January 2012, I was intubated for respiratory failure, spending 20 days in ICU, 18 days of which were on mechanical ventilation. One week into the hospitalization, it was determined that I had GPA and MRSA pneumonia. I was immediately started on CTX, prednisone and anitbiotics. Everything was going fine until last week when I became neutropenic. WBC's were 2.4. I was cut back to 50 mg CTX, but now it seems that the chest discomfort is starting to return. Needless to say I am a little shaken and am not sure what to expect.

I think that it is awesome how so many of you give the support and share your own experiences to help us "newbies". What a fabulous group you are!

[drz]

Unfortunately many of us can relate to what you say only too well. Sorry you have to join our amazing group since the cost of membership seems rather high. I still have night mares about coming out of intubation and the few glimpses I recall about it. Low WBC from CTX seems rather common as do infections following from neurtopenia but usually they can treat them effectively with antibiotics. Drug allergies can complicate this and cause more unpleasantness so the first few weeks can be pretty rough but things generally start getting slowly better with treatment but it can take awhile so hang in there and try to survive the roller coaster ride as best you can. It should get easier once pneumonia is under control.
Tell us more about your symptoms and treatment.

[Dryhill]

Bajarel, welcome to this very exclusive club and to our wonderfully exciting disease ...... aww come on WG is exciting, you never know what it is going to do next. After all who wants to be boringly healthy? Ok I am being a tad cynical, I am glad you found us, but really sorry you needed to. I have not had the problems you have encountered, but someone on this site probably has and will be able to give you good advice.

Jim

[Al]

I had IV CTX, rather than the oral form. Though my WBC went toward the low end, the number never was that low. What happened to you is, of course, why they backed off your dosage. Tje other thing to worry about with CTX is PCP. Are you taking bactrim now?

al

[annekat]

Welcome, Bajarel, and you've come to the right place! You are right, this is a fabulous group, and the only good thing about having Wegener's. We hope to hear more from you in the future, whether it's about Wegs or about some off-topic subject. We are open to almost anything here, and humor is especially welcome! I understand your feeling "shaken" at your diagnosis, as we all felt that way in the beginning.... just keep in mind that for many or most of us, things have gotten a lot better.

[elephant]

Welcome Bajarel, welcome! You went through a rough time, give yourself time to heal. If you feel like WG is sneaking up on you let your Rhuematologist know soon. We are here for you.

[Sangye]

Hi Bajarel, welcome to the group! Your new symptoms have me concerned. Please contact your doctor asap. While you're still early on in treatment it's very easy for the Wegs to flare up again. It was a good call to lower the ctx, but it also carried the risk of causing the Wegs to flare.

You might be unable to stay on ctx. Even at a subtherapeutic dose my bone marrow was failing and I cannot take it again. Rituximab is your other option.