First Flare

[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.