First Flare

[JimmyJames]

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.

[annekat]

Thanks for the report. It was interesting and helpful to many of us. The time leading up to your flare sounded so much like what I went through initially, before dx, for a couple of years..... with docs thinking it was just a bunch of sinus infections, etc. , treating those with antibiotics and pred. If they cleared up, they always came back. Since you had already been dx'ed with WG, a long time ago, no doc should have dismissed these symptoms as not related to WG! I am glad you now have an appointment with Mayo in Oct., and I hope it is pretty soon. That should make a big difference in your confidence in your future treatment.

[Birdie]

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.

Wow, that's the classic flare description. Everything I read seemed so predictable, right down to the part about you or your doctor catching it sooner.

The first warning for Wegeners patients should be:

Don't become complacent once your condition is under control.

The second warning is:

Don't avoid the emergency room.

You could have been much worse in another week.

[Pete]

Hi JimmyJames,

I don't know that Mayo will change your meds. They may adjust the dosage or add something - perhaps a round of rituximab.

Do you rinse your sinuses regularly? Some folks on here use a daily saline sinus rinse to flush out the goop that accumulates.

[drz]

Hi JimmyJames,

I don't know that Mayo will change your meds. They may adjust the dosage or add something - perhaps a round of rituximab.

Do you rinse your sinuses regularly? Some folks on here use a daily saline sinus rinse to flush out the goop that accumulates.

My Weg expert at Mayo recommended I stay on those meds and I have after I slowly taper the pred down to 5 mg. If your labs look good and you feel better they aren't likely to make much change, maybe to just try taper the pred down.

[MikeG-2012]

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.


Thanks for sharing this story! We all need to take pro-active control of our health and be bulldogs and bite a few a__es once in a while when we feel sick, and aren't being taken seriously by our docs. Glad you are going to Mayo, and I really hope that things get better for you as the weeks/months progress.

Nikki, are you reading this? Please don't let this happen to you!!

[MikeG-2012]

Don't become complacent once your condition is under control.

I carry around a screen shot I took at a convention once. The screen read: "Complacency will be the architecture of your downfall!" I keep it on my phone as a reminder that I cannot do that at work with my A/V technology skills, and I cannot be complacent with my health either.

[annekat]

JimmyJames, I agree with the others above that the meds you are now on sound pretty reasonable and typical. I'm also glad that you feel you are rebounding well..... if you weren't, you would know it! it sounds like your original rheumy, who has now retired, did a good job of getting you into remission the first time, with help from you, of course! If Mayo doesn't see a need to change your meds, getting in with them will still give you a more solid basis for dealing with any future flares. I don't know how close you are to Mayo, but if it is easy for you to get there, you are fortunate. Good luck, and let us know how it goes!

[Jaha]

Wow, JimmyJames, that was a very serious situation you were in. I'm glad that you are going to Mayo soon, for your new Rheumys, opinion. They really might consider giving RTX as it seems to put most Wegs flairs in their place. Wishing you all the best and take care of yourself. Please keep us up to date on your condition.

[newbie]

Would you mind clarifying what was invlolved when you say "slight increase in some of my labs?"
Wondering which labs how'd increase and if your ANCA was positive or negative.
In the midst of determining whether or not I am experiencing my first flair since Rituxan treatment in February. I am in the very early stage if so and am battling with docs to keep it that way!
Sorry you are going through this but appreciate your sharing!

Sent from my SM-N900V using Tapatalk

[Green Grass & High Tides]

I can relate to continuing to work despite obvious life threatening consequences. I probably would have driven to work w 5% lung capacity too. Depleting limited energies on work/financial needs instead of saving that energy for health restoration has been a struggle for me from the start.

Btw- Thanks for the timeline Jimmy.
Your wegs brother,

Tom

[Erin2014]

Hi JimmyJames,

Thanks for your post. I'm new to the forum and diagnosed a year ago. I'm started azathioprine in Jan - 150 mg and stopped pred in May. I haven't had a flare so I can't comment on your situation, but I appreciate you sharing as it gives me some valuable information. The one take-away from my short time on this forum is that we all have to be pro-active and our own advocate regarding our health and Weg symptoms. I live 3 minutes from the kidney center in my city so I don't have any excuse not to get my butt down there if I'm not feeling well.

By the way, during the time I was hospitalized last year and received my diagnosis I also had soars on my elbows. I thought they were bites at first, but when I saw a post a few weeks ago from a mother with a teenager diagnosed with Weg wherein she posted a picture of her daughter's elbow it looked exactly like my elbows did.

Sorry you had to go through that but it sounds like you are feeling better. When I was first hospitalized I was having difficulty breathing and was given O2 right away. The choking and feeling of not been able to breath was terrifying...

Wishing you a speedy recovery!

[Birdie]

I also had soars on my elbows. I thought they were bites at first, but when I saw a post a few weeks ago from a mother with a teenager diagnosed with Weg wherein she posted a picture of her daughter's elbow it looked exactly like my elbows did.

This is one of those symptoms many people seem to have, yet I've never heard of a diagnosis. I have them, much smaller and only on my fingers now. Many more have come and gone.

Doctors don't seem concerned.

Does anyone here know what they are or what they may indicate?

[drz]

I remember reading a study that skin problems like lesions were a common problem with people who have Wegs for more than five years. I wonder if it relates to our suppressed immune system. I know I started I having various lesions that needed to be frozen with nitrogen a few years ago.

[Birdie]

I started I having various lesions that needed to be frozen with nitrogen a few years ago.

How'd that go? Gone with no side effects? Was there any real concern about them from medical types? Did they have a name for it to go google-ing?

I've found that they come in threes. Always three of them near each other, show up at the same time usually in a triangle, once in a straight line. Started to think aliens were doing it since I can't find anything about skin conditions of any kind showing up three at a time. Or in any specific quantity. I really just blame prednisone, part of the earthquake side effect sorta rubish. Not anything I'm concerned about. It's idle curiosity since they seem to be no problem. Guess it could be helpful if I found out their presence was an indicator of something.

[drz]

They are mostly two types of keratosis and some of them are often considered pre-cancerous. I had a couple biopsied. Mine mostly are discolored spots or blotches or scabby and itching and inclined to keep coming back after I scratch them off. Those are the ones they now freeze so it forms a scar tissue that is bit lighter like most scar tissue. I also had open sores that often itched too and some of those were also froze..

[JimmyJames]

Yes I have been rinsing my sinuses, once or twice a day. It usually helps for awhile but the crusting and junk keeps coming back.

[JimmyJames]

Would you mind clarifying what was invlolved when you say "slight increase in some of my labs?"
Wondering which labs how'd increase and if your ANCA was positive or negative.
In the midst of determining whether or not I am experiencing my first flair since Rituxan treatment in February. I am in the very early stage if so and am battling with docs to keep it that way!
Sorry you are going through this but appreciate your sharing!

Sent from my SM-N900V using Tapatalk

I will have to go back and look at the reports from that visit, I do not recall off the top of my head what levels were elevated. I know my Creatinine (kidney function) was up to 1.4 or so at the visit before the flare (>1.25 is considered normal). As a reference my Creatinine level my first day in the hospital was 2.0. Luckily it is back down to 1.25 now.

Good luck with everything and I wish you the best of health.

[annekat]

Yes I have been rinsing my sinuses, once or twice a day. It usually helps for awhile but the crusting and junk keeps coming back. I may need to do several rinses in a row to loosen up the junk and get it flowing out. But I usually only do this once a day, though I know two is preferable. You may find less stuff coming out as your WG becomes under more control.