tissue samples

[Chris G]

LisaMarie
Another disease you might want to research is Relapsying Polychondritis. RP causes inflammation of the cartilage in your body.....nose, ears (external ear usually), trachea, joints, etc. MANY of its symptoms are similar if not the same as WG. I researched RP extensively when I flared for the first time in 2007, and could not find a doctor who knew anything about these diseases. I believe RP is usually ANCA negative. For a long time I believed that I had RP, until my nasal crusting and bleeding began last year......crusting and bleeding are not symptoms of RP.
Good luck
Chris

[drz]

I might be one of the rare ones in that my ANCA markers were extremely high and the kidney biopsy the next day confirmed my kidneys were riddled with Wegener's activity so there was no question about my diagnosis. Usually things are more mixed and results are not as clear cut so diagnose is often best guess.

Now I have cold or maybe it is start of Wegener's flare since my prednisone is down to 9 mg on my taper down. The diagnosis of what it actually is will depend upon what develops so it is a waiting game with a hope for the best. I think flares are often more difficult to diagnose than original Wegener's cause symptoms are generally much prevalent in the initial presentation but the diversity of symptoms and rarity of disorder make it difficult to diagnose so it often takes many months or even years before we finally get an accurate diagnosis.

[Sangye]

drz, it's not rare to have (+) ANCA and (+) biopsy. It's more unusual not to.

I also was very fortunate to present with severe lung hemorrhage, vasculitic rash, severe joint pain, severe anemia and fatigue, off the chart ESR and ANCA, and a (+) skin lesion biopsy. It all spelled W-E-G-S.

[drz]

drz, it's not rare to have (+) ANCA and (+) biopsy. It's more unusual not to.

I also was very fortunate to present with severe lung hemorrhage, vasculitic rash, severe joint pain, severe anemia and fatigue, off the chart ESR and ANCA, and a (+) skin lesion biopsy. It all spelled W-E-G-S.

Yeah, but look what kind of shape we are in now. i would gladly have had less severe symptoms and more question about my diagnosis, wouldn't you? I don't know if presenting with our severe symptoms was really fortunate, it just made our diagnosis easier and treatment more difficult and made us feel lucky to survive.

So how are you doing today. Did the truck move on? Has the rtx kicked in so you can feel the difference?

Hope you are having a good day! Virtual for you

[LisaMarie]

Sangye...hope u r doing well....I have been so fustrated lately....i have all the symptoms plus tracheal stenosis..unexplained fevers...nasal crusting...joint pain...rashes..mandible mass...right sinus issues worse than left with no releif from antibiotics....hearing loss right ear left ear ringing and pain that comes and goes ...left side swellingof my left leg and ARM and hand ...every rising CRP...funky burning pain on the top of my left foot that comes and goes and fatigue...motto forget tongue lesions...i think it is harder when we have what they call limited WG....then to go to Mayo and have a non WG specialist question my diagnosis...after all the drugs i have taken...good news is i finally saw Dr Specks...have to go back on May and be on 10mg pred...going to 20 this weekend...and it is where i generally start having problems..so wish me luck...plan on Dr Specks being my main WG guy and use the one hear as a go thru person...i have so many docs now it is hard to keep them all informed and straight....did u ever feel this way in the beginning?

[Sangye]

Yeah, but look what kind of shape we are in now. i would gladly have had less severe symptoms and more question about my diagnosis, wouldn't you? I don't know if presenting with our severe symptoms was really fortunate, it just made our diagnosis easier and treatment more difficult and made us feel lucky to survive.

So how are you doing today. Did the truck move on? Has the rtx kicked in so you can feel the difference?

Hope you are having a good day! Virtual for you

Thanks, drz. For me it was actually much better to have a severe onset and be at death's door. I had such difficulty accepting the medical treatment as it was. If it had been less severe or a questionable dx, I might not have started treatment at all. It took me a year to go to an MD, and I only went because I was nearly dead.

I'm pretty wiped out because of the long day at JHU yesterday. Just holding out for next week, when the rtx should kick in.

[Sangye]

Sangye...hope u r doing well....I have been so fustrated lately....i have all the symptoms plus tracheal stenosis..unexplained fevers...nasal crusting...joint pain...rashes..mandible mass...right sinus issues worse than left with no releif from antibiotics....hearing loss right ear left ear ringing and pain that comes and goes ...left side swellingof my left leg and ARM and hand ...every rising CRP...funky burning pain on the top of my left foot that comes and goes and fatigue...motto forget tongue lesions...i think it is harder when we have what they call limited WG....then to go to Mayo and have a non WG specialist question my diagnosis...after all the drugs i have taken...good news is i finally saw Dr Specks...have to go back on May and be on 10mg pred...going to 20 this weekend...and it is where i generally start having problems..so wish me luck...plan on Dr Specks being my main WG guy and use the one hear as a go thru person...i have so many docs now it is hard to keep them all informed and straight....did u ever feel this way in the beginning?

I have been like that a lot, Lisa Marie. I really understand. It may take a bit to get settled in with Mayo and your new docs there. It took me a few months at JHU. It will help when you can get all of them (even local) communicating with Specks. Meanwhile, all I can say is take one day (or hour) at a time. Don't look too far down the road or worry that it'll always be like this. It won't. Hugs to you.

[LisaMarie]

Thanks Sangye...I try not to look too far back or too far ahead ...it just fustrates me...Have a great weekend

[Sangye]

I've recently learned that frustration is anxiety in disguise. I can certainly relate.

[elephant]

LisaMarie, I still get the swelling of my left lower leg on and off. It's annoying, at one point even my left forearm would swell. Your symtoms will get better once the wegs get under control.