Good afternoon all,
I am writing this 5 days removed from a week long hospital stay getting a flare put in its place. I will try and spare some of the long details but am interested in seeing if anyone has experienced similar WG involvement.
I was diagnosed in December 2007 with WG after a week of tests in the hospital with a lung biopsy. The effect areas were my lungs, ears, and it was starting in on my kidneys. I was started on 60 mg of prednisone and cytoxan (I don't recall the dose). Over the next few months i was tappered off of prednisone and about a years after starting the cytoxan was switched to methotrexate. Time passed and everything returned to "normal" and after about 2 years of the methotrexate I was switched to azothioprine. I have been on some azothiporine ever since.
About a year ago I started to have a not of sinus pain and just sinus crap. A lot of drainage and clotting. I would go to my general doctor/ent pretty much every month and they would say it is a sinus infection and give antibiotics and occasionally a small burst of prednisone. The sinus issues would improve for awhile then pick back up to only die down again. During this time my rheumatologist (who I just started seeing fall of 2014 because my previous one had retired) noted a slight increase in some of my blood work but didn't seem concerned about it. Around May of this year i can down with what was diagnosed as pneumonia, this really kicked my ass. I was out of work for a week and had almost zero energy. I eventually recovered from that but not too long later i noticed a few sores on/around each of my elbows. I pointed them out to my rheumatologist and he disregard them and referred me to a dermatologist.
Now on to the recent part. For the past few weeks i have had an increase in my sinus pain/drainage. It felt like they was mucus/snot in the back of my throat that i just could seem to get clear. Every once in a while i would work loose a blood clot/mucus thing and cough it up. Like the prior months i bounced back from my general doctor to the ent both not being really sure what direction to take. Well last Monday i woke up and knew i was in rough shape, I would tire with almost any walking. Again it felt like there was crap draining from my nose that was just getting in the way, i was not really able to talk. Anyways i decided to go to work but by the time lunch came around i called my wife and asked her to meet me at home to take me to the hospital. In retrospect I probably shouldn't have driven home because i could hardly breath but you live and learn. I get to the hospital and am quickly moved through triage into a room. They start an IV and start running some tests and get me ready for a ct scan of my chest. While waiting for the CT scan I pretty much start choking and eventually cough up about a quarter sized blood clot. I get the scan done and obviously they start the process to admit me into the main hospital. At this point it is pretty obvious i am having a flare of WG so they start me on steroids and start pumping in antibiotics. I get moved up to a room and still have very labored breathing, needless to say I didn't sleep much that night. The next morning I am scheduled for a bronchoscopy with a pulmonolgist so we can get a better look at what is going on in my lungs. I get preped for the procedure and it is preformed. After the procedure it is determined it wasn't necessarily WG involvement in my lungs this time, it was in my trachea. Looking at the pictures from the procedure it was amazing i was able to breath at all. My trachea was filled with blood clots stacked up on each other. The doctor estimates there was 5-10% of the airway open. While preforming the procedure he removed as much as he could with out touching the sides of the trachea (as doing so started bleeding).
After another day of resting and still struggle to breath (especially through my nose) the ent decided he wanted to go in and clear out my sinuses and take a look at my vocal cords to make sure they were not paralyzed. This procedure went really well and i could breath through my nose immediately after. It was also determined that my vocal cords were just inflamed and not paralyzed.
After another day and night of sitting in the hospital i am woken up by coughing at around 4:00am. after a few coughs i cough out a huge mass of blood clot/mucus. Sorry for the disgusting description but it was about the size if you take 5-6 pieces of chewed gum at once. Once i got that out i could instantly breath better and could talk again.
Saturday I was discharged from the hospital with a prescription on 60mg of prednisone and still on the 200mg of azothioprine. So far i have rebounded pretty well and am feel way better that I have the last couple of months.
The funny/ironic thing about this whole flare up is I already had an appointment scheduled to switch my WG care down to the the Mayo Clinic in October. Once I am seen down there I am sure they will switch me off of the azothioprine to a different drug.
It is easy to say looking back now but I think I should have caught the flare sooner, or at least I think my doctor should have.
Sorry if this rambled on and doesn't flow, I wrote it over 2 days.
I can clarify anything and am open any questions that anyone may have.
Thanks for reading.
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