Update on Holly

**Daggar** · 06-09-2011, 07:52 AM

Holly had her last iv methylpred last Thursday but will continue to stay put at 10mg of oral/day.

She was checked over carefully while receiving the treatment and they did discover a small sore in her nostril. Kind of scared us a bit when they first noticed it but Rheumy told us that since Holly had a bit of a head cold the week before (making the rounds at home and school) she isn't too concerned but will keep a close eye on it. No joint or muscle pain to speak of during the days leading up to the treatment since she stopped doing the heavy bag. Appears that she was aggravating that by doing too much.

According to the Neph who has been at Holly's side since the beginning, sinus issues will continue to pop up at times (especially during colds/viral infections) and does not necessarily mean WG is back. Her nasal sore has healed mostly since restarting the polysporin/vaseline mix and there were no signs of blood at any point.

Question: How can you tell the difference between ongoing sinus issues and a possible flare-up?

Her bloodwork was fine and I guess that may answer my question?

**Sangye** · 06-09-2011, 07:55 AM

That's great news, Daggar. It's understandable to have a lot of apprehension right now. Some of the others with sinus involvement can give you better info about how to distinguish baseline symptoms from Wegs.

**pberggren1** · 06-09-2011, 08:08 AM

I have found it very hard to distinguish normal nose and sinus stuff like infections from Wegs.

As soon as I start getting worse in the nose and sinus area, like increases soreness in nose, more mucus and blood, sinus headaches, etc, I immediately have all my blood work done to see where the WBC, ESR, CRP, and ANCA are at. This gives me a better idea of what is going on. And of course I see my doc right away as well. My ENT also comes to town once a week and can get in to see him with no appointment.

Over time you will learn what is damage from Wegs, infections, and Wegs activity itself.

**Daggar** · 06-09-2011, 08:09 AM

Sangye, with all that you have had you've never had sinus involvement?

**Sangye** · 06-09-2011, 08:20 AM

LOL Very minimal, nothing really.

It's taken me awhile (and plenty of talks with Dr Seo) to realize that I actually don't have that much Wegs involvement. The problem is that it's been refractory to most treatments and the form it takes every time (ie alveolar hemorrhage) is severe disease activity. My body doesn't just flare a little, it goes right into lung hemorrhaging every time.

Other than that, most of the problems I've had/ still have are secondary to Wegs-- drug reactions, damage from Wegs or the drugs, conditions caused by Wegs or the drugs, etc.... The only actual Wegs involvement I have is lungs, joints, skin (rashes and ulcers--none of that for awhile now) and very minimal nose involvement. There are many people with far more involvement but far fewer complications!

**Daggar** · 06-09-2011, 08:27 AM

Don't get me wrong - I love your avatar... but it may be time to use that "new book for understanding WG" that I just posted in "funny stuff".... this is very complicated!!

**Sangye** · 06-09-2011, 08:38 AM

Originally Posted by Daggar

Don't get me wrong - I love your avatar... but it may be time to use that "new book for understanding WG" that I just posted in "funny stuff".... this is very complicated!!

LOL love that picture!

Look at it this way: If one car repeatedly blows head gaskets (not realistic, but use your imagination) but has no other problems, and another car has a lot of problems that are easily fixed with general maintenance, which car is in better shape?

**Jack** · 06-09-2011, 09:11 AM

I've had a lot of sinus involvement and the difference between infection and Wegener's for me was that the infections were mainly identified by sinus pain, but Wegener's flares caused a lot of nasal crusting and bleeding.