Has anyone ever heard?

[Trena]

I also remember that my X-rays looked fine when I was first sick and it wasn't till the doctor ordered a cat scan on my lungs and then they were about to see the abnormal growths in my lungs. After that then they did a biopsy on my lungs to get the final results that it was Wegener's. So, it's so important that we get plugged into he right doctor that keeps on looking when we are first sick to get a proper diagnosis. I know that this is hard in the beginning because we feel so awful and we are at the mercy and in the hands of doctors we don't know. I was lucky and very blessed that I was connected to the right doctors in the beginning of th journey.

[Tom]

I had the runny nose and self medicated with an OTC antihistamine! That was in 2008. I had a continual problem with what I called swimmers ear.
Finally I went to my dr and got treated for sinuitis! That was in June 2009 I suppose, In late August I went back to the Dr. (my fault I didn't go back sooner) and got treated again! I went back in Dec and had sinus surgery Dec 17 09.
It seems like it snowballed from there but had been building since my cancer or even before that in 2006!
I accepted the explanaition that all the symptoms were not there! Anyway the oncologist said it all came together when I was admitted with purpura and full blown flare up!
Heres a tidbit for how much is known about this disease. The nurses early on in my journey had to google it to see what it was! One nurse relayed to me that they went over it for an hour or so in college but it was so rare, they talked mostly of Vasculitis in general!
I do feel that I was connected with the right Drs and they came together to make a plan for me! It sucks but Im still here!

[Birdie]

I know that this is hard in the beginning because we feel so awful and we are at the mercy and in the hands of doctors we don't know.

There was a new guy a few weeks ago who diagnosed his own Wegener's. I'm still amazed.

[annekat]

There was a new guy a few weeks ago who diagnosed his own Wegener's. I'm still amazed.

I think I could have dx'ed my own if my saddle nose had happened a little earlier. I'd already been on the internet and read about Wegener's and seen pictures of saddle noses, and of course ruled out the possibility of having anything that freaky and bizarre. I noticed my saddle nose right before my official dx, and went marching into my ENT's office to show it to him, where he and I pretty much dx'ed it together, though he of course took a nasal biopsy, which was conclusive. I do have to give credit to the doc who saw my lung CT scan, and suggested Wegener's. He guessed it first. But the saddle nose was the clincher, since cocaine use and syphilis were not relevant in my case. (I know I've told this story a million times before, maybe even in this thread.)

[Birdie]

(I know I've told this story a million times before, maybe even in this thread.)

Testify Sister, and keep doing it. Need to get the word out.

[annekat]

Testify Sister, and keep doing it. Need to get the word out.

OK, I will. Of course if the saddle nose had happened earlier, my ENT would also have known what it was and what I had.... Too bad it takes something like that, or worse, for a doc to know what someone has had for over two years. I'd rather he'd thought of it earlier before the nose dropped.

[theredhead]

Absolutely! Mine has always been nose and eyes. Diagnosed in 2001. Haven't had a drug free remission yet, but with medicine I have kept on trucking. Good luck. Hope it stays this way.

[little sister]

Dirty Don, I also was mostly upper respiratory (a little lung involvement that was cleared up with prednisone and Rituximab). I was extremely fortunate in that I was diagnosed very quickly. Less than a year later I am officially in remission on Methotrexate for maintenance. My question relates to hair loss. I was losing small amount of hair on Prednisone but now I am losing hair at much faster rate. Is this something you experienced? If so, were you allowed to use a hair restorer? I'm not complaining - my sister was diagnosed and dead within 6 months so I know how very, very lucky I am. But still... It would be nice not to lose anymore hair.

[annekat]

Little sister, I take folic acid with my MTX, as many do on here, which is supposed to counteract the negative effects of the drug including hair loss. I'm not sure what other things it helps counteract, but hair loss is the one most often mentioned. My hair had already thinned quite a bit from age and from use of CTX, but has stayed about the same, and hasn't gotten any thinner, since starting the MTX with folic acid about 4 years ago. Folic acid is an OTC supplement found in most stores that sell vitamins and such, and it is not very expensive. it doesn't have any negative side effects, and I recommend it. I use an 800 mcg tablet and then there is 500 mcg in my everyday vitamin supplement, for a total of 1300 mcg...... I think around 1000 mcg would be enough, but that's how it works out with my current vitamin pill brand.

[little sister]

Thanks Annekat for your suggestion! I already take one 1mg (1,000mcg) tab folic acid each day. I had been told it was to avoid the mouth sores you might get with MTX but I hadn't heard about the hair loss issue. I admit I only did a brief search on side effects because I have such faith in my rheumatologist (she is at John's Hopkins Vasculitis Center) and if she says Methotrexate is the best maintenance drug for my GPA, I figure that's what I'll take! I really have been so lucky at every stage of the game and haven't had some of the bad side effects that high dose predisone and rituximab can cause so maybe I'm due. Hey, maybe it is coincidental and not caused by MTX all all. I see my doc in May so I will ask her if she has any suggestions. But I am seeing a lot of hair in the shower. Whine, whine, whine...