Took some prednisone today...

**Alysia** · 09-28-2015, 09:44 PM

Hi. After our chat yesterday, I thought I will also share here my thoughts.
When I was 17 yo, I had "atypical arthritis" (it is always the "atypical"... ) with weired wounds on my legs, like ulcres, big as a coin. It took long time to heal. Months. And it was connected to the onset and healing of the "arthritis". I think that It was a wg flare, not diagnosed. Then I was in free drugs remmision for many years and then smoldering for years without diagnosis untill the acute flare that almost killed me. I think that wg can have many manifestation and/or we might have together with it another weired and rare auto immune disease. I have also colon involvenent. My gastro doc said that its wg but he also said that it can be another AI disease, but that it doesnt matter because the treatment is the same and should help both. And here I am getting to the point: all the years I had scars from the wounds. But after first round of rtx the scars disapeared. This leads me to the conclusion that it was wg or any AI disease activity.
Bottom line: I think that you need to get treatment for wg (pred is not enough) and I think that it might help the ulcer.
And as I told you, my sweet dr. Phil is in charge from above now, so he will help you....
Please update. Hugs ♡♡

**annekat** · 09-29-2015, 02:22 AM

This link was interesting, though you all may already have seen it: Medscape: Medscape Access
It suggested a relationship of this to systemic diseases although it made a distinction between this and similar ulcerative skin conditions due to vasculitis and others. It suggested an imbalance in the immune system as a cause, and corticosteroids, antibiotics, immunosuppressants, and biologics as possible treatments. A little confusing as to why it would suddenly pop up, and it was the only article I read.

Alysia, I agree with your idea that some of our weird systems a lot earlier in our lives could be related to smoldering WG. I didn't have anything as dramatic as your skin ulcers, but I did have some weird tinnitus and ear pressure about 8 years before my big WG ear infection and about 10.5 years before actual diagnosis. Before that, in my childhood and early adult years, I had a lot of bronchitis and asthma, at least partly triggered by allergies, and I know that isn't uncommon, but no one else in my family had it, so I wonder.

**Treesie** · 09-30-2015, 10:33 PM

In 1992 I had a fever of unknown origin along with headache, night sweats, aching from head to toe, and a weird tightness in my throat. Every test came back negative. After six weeks I suddenly started feeling better, except for lingering sinus issues that have been with me ever since.

A few times over the years these same exact symptoms would hit me out of the blue, sometimes for a week or two, sometimes for a couple days, sometimes for just a few hours.

I have no doubts that my disease started in 1992, but it took 20 years and almost dying of it to get a diagnosis. The doctors would point to allergies, virus, sinus infection

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**Treesie** · 09-30-2015, 10:39 PM

Got cut off!

Sinus infection, but they never really knew what was going on. It took nearly dying for me to get a diagnosis. Funny thing too, every time I was put on short term prednisone for another condition I would feel better than I had for years. This clue was also pooh-poohed when I brought it up to the Docs.

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**Pete** · 09-30-2015, 11:43 PM

Originally Posted by Treesie

This clue was also pooh-poohed when I brought it up to the Docs.

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Hence, the importance of seeing a doctor who is well-experienced in treating GPA/Wegener's...

**annekat** · 10-01-2015, 02:17 AM

Docs are so good at pooh-poohing things. It's like their motto is, "when in doubt, pooh, pooh". Yes, we all need good docs who are experienced with WG and will listen to us when we describe what is going on and even if we have our own theories about it. We also need ALL docs to stop putting this disease, and others of similar rarity and characteristics, back into some corner of their mental filing cabinet. Even the docs who are not specialists, whom we might be seeing for other reasons, should be able to talk to us about it and support our efforts to understand what is going on in our own bodies.

**annekat** · 10-01-2015, 02:33 AM

Originally Posted by Treesie

I have no doubts that my disease started in 1992, but it took 20 years and almost dying of it to get a diagnosis. The doctors would point to allergies, virus, sinus infection
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This is a great example of what happens to a lot of us, whether it takes 20 years, 5 years, or whatever. I'd guess it started a lot earlier than we think for a lot of us. It's hard to pinpoint it because a lot of people have allergies, sinus infections, etc. It's very scary when people are hit hard and fast, as some are, but more insidious when it takes several years or 20 to progress to that point.

**delorisdoe** · 10-03-2015, 11:39 AM

image.jpgIt hurts

**annekat** · 10-03-2015, 12:14 PM

Ugh, back on topic.... it really looks awful... shanks for sharing the pic. Makes me want to look back at what I already researched and read it again. Best of luck in getting rid of that.