It is good to know...

**blm** · 09-17-2016, 07:45 AM

Thanks Anne -

You are right. I'm getting lots more info here and some really great advice from folks who know. I started tapering this week, going from 60mg to 50mg. Next week I'm supposed to go from 50mg to 40mg and so on until I get to 20mg. I'll keep a close eye on what my body is telling me and be sure to share that info with my healthcare team. At this time I'm not sure who to tell first, but I'll figure that out too.

Thanks for the encouragement!

Becky

**annekat** · 09-17-2016, 08:19 AM

You're welcome. Everyone says something a little different, and that is OK. It's true that everyone is a little different in how we react to the meds and respond to treatment. The more you read on here, the more you'll get a feeling for it all and will be more confident in addressing concerns with your docs. I think you'll do OK with their current treatment plan, and that can always be revised later. It sounds like you were diagnosed relatively soon after having problems, even though there was a delay. For me it was 2.5 years, and even more for some others. This is a point in your favor and will lessen the risk of long term damage to organs and tissues. Good luck, and keep us posted!

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**blm** · 09-17-2016, 08:32 AM

Actually, people thought I was crazy, but I have been sick every July - August since 2012. I was looking at my medical records the other day and confirmed this to be true. My first visit to the ER was for crippling back pain in 2012. I've been seeing a chiropractor about twice a month since then for inflammation and got quite a bit of relief. I've seen folks for sinus infections that come and go. It just got so bad this time someone finally figured it out before it killed me.

So, it has been awhile coming. And it is indeed good to know.

**annekat** · 09-17-2016, 08:40 AM

Aha. So you may have had what we call "smoldering Wegs" for a few years. This is not uncommon and it may come and go. I had quite a time with ear and sinus infections and hearing loss that were attributed to allergies, which I do have, until my lungs became involved and I got a dx. But even before all that, there may have been signs of smoldering disease.

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**Gab122** · 09-17-2016, 09:38 AM

I was diagnosed with pneumonia 2x in 2015 before my ear symptoms started in May 2016 and dx of GPA in Aug 2016. I wonder if that was 'smoldering'?

**annekat** · 09-17-2016, 09:48 AM

Originally Posted by Gab122

I was diagnosed with pneumonia 2x in 2015 before my ear symptoms started in May 2016 and dx of GPA in Aug 2016. I wonder if that was 'smoldering'?

It could well have been, especially if pneumonia was uncharacteristic for you. My first big event was a giant antibiotic resistant ear infection in both ears, resulting in hearing loss, when I'd never had an ear infection in my life.

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**blm** · 09-17-2016, 09:48 AM

Smoldering WEGs. Sounds kind romantic, right? Not! I believe it though. I knew something was happening at the same time every year. It also happens to be a very busy time for me at work with lots of stress. I'm changing that for July 2017! I'm learning to delegate!