Wegener's in my life

**Raynb** · 08-12-2015, 05:12 PM

Hello. I am new to the site/forum.

I was diagnosed with GPA on Dec. 17, 2014. My symptoms began Nov. 2, 2014. My right eye turned red. I was finally diagnosed with scleritis. The symptoms ripped through me quickly. I had a terrible sinus infection and then my joints went.( Could not walk or move right arm at times).Then my left eye developed scleritis. Then nodular scleritis developed. Then tinnitus and hearing loss. Nodules in my lungs. I was very scared at this point. The doctors were confused but the PR3-ANCA results got me to the rheumatologist quickly. I feel very lucky that I went from symptoms onset to specialist in 6 1/2 weeks. I missed 3 months of work. At this point I am doing well and am so grateful. Just finished 8 months of prednisone but am still on the chemotherapy medication.
My symptoms began 4 days after getting a flu shot. The doctors say they cannot prove that the flu shot triggered/induced the Wegener's but the rheumatologist says it is the most likely trigger and that he has had this happen before. The rheumatologist says I can never have another flu shot again in my life. I am fine with that and wish I had never gotten this shot in the first place. (Third flu shot of my life as they are required for my place of work. Or wear a mask from November through April.) I am in Canada.
I am grateful to be alive. Thank you for having me at your forum.

**Birdie** · 08-12-2015, 05:37 PM

Welcome Raynb.

I'm new here too but I gotta say I've never before seen a group with so much compassion, understanding and knowledge as this one. Maybe it's the rarity of Wegeners makes us an instant member of the club. Ask anything and you get a straight reply from at least several members. From your post it sounds like you have a grasp on things but there must be issues you could use help with.

Gary

**woz** · 08-12-2015, 09:14 PM

Hi Raynb, good to see that your on the mend, anything you need to know, just ask. Wegs effects us all a little differently, different effects, medications, side effects, duration, flares, complications, the list keeps going, its worthwhile reading the posts if you have time, there's a lot of information there, you wont find anywhere else.

Regards Woz.....

**mishb** · 08-13-2015, 11:12 PM

Hi Raynb and welcome to the forum.

Our lovely member Marta would be interested to hear about you receiving the flu shot and your Rheumy saying he has seen it before. He probably saw it in Marta.
She is also from Canada.
I'm sure when she sees this post she will come by and say hello.

Take care and .........

**kaysee** · 08-15-2015, 12:56 PM

Hi Raynb and welcome to the forum. We are glad you found us but sad why you had to go looking for a forum such as ours. It sounds like you had a rather quick diagnosis which is lucky. It often takes months or even years to figure it out. It took my docs two years to finally give me a correct diagnosis and finally treatment that helped. Hope you get to feeling well soon.

**annekat** · 08-16-2015, 03:31 PM

Welcome, Raynb, and thanks for joining and sharing your experience. Your Wegs did come on and get diagnosed a lot faster than most of ours. That is very good in many ways, though it would be much better if you hadn't gotten it at all. But I'm glad you are doing so well, and that is encouraging to others. The part about the flu shot is interesting, for sure, as most docs seem to recommend them, many of us have gotten them with no problem, etc. But count me among the ones who hasn't gotten one because I don't want to risk rocking the boat. That may be a crazy illusion, or not, but in any case, I think I do just fine without them. I, too, am waiting for Marta to chime in here, and I think you'll find it worth the wait.

**Raynb** · 08-18-2015, 06:00 AM

Well I think mine got diagnosed so quickly because of the rate of symptoms progression. The specialist said I was "middle of the road" for progression at 6 1/2 weeks. Another 6-7 weeks and I may have been in the fatal zone. I also pushed doctors because the symptoms were in line with the research I'd done. When I got the very sore lesions in my nose/septum and serious hearing loss, I went to the hospital. They looked at my blood work and the alarm bells went off. Next day at ENT doc, day after that at rheumatologist. Two other doctors dismissed my Wegener's concerns even with the PR3-ANCA blood test results and all the symptoms but I kept pushing. Glad I did.
Initially I looked up what diseases are associated with nodular scleritis. I came up with about ten. Then I just started narrowing it down by the symptoms. It came down to some form of rheumatoid arthritis or GPA. Sure looked like GPA to me. The rheumatologists diagnosed me pretty quickly once I got to them.
I am grateful and lucky. Something told me to keep pushing even when I was dismissed by two doctors.

**Birdie** · 08-18-2015, 06:21 AM

Originally Posted by Raynb

Initially I looked up what diseases are associated with nodular scleritis. I came up with about ten. Then I just started narrowing it down by the symptoms. It came down to some form of rheumatoid arthritis or GPA. Sure looked like GPA to me.

I am very impressed and you're fortunate to have made the connection for yourself in such a short time. Easy to confirm in hindsight but you did it up front. I need a doctor, are you accepting new patients?

**Raynb** · 08-19-2015, 08:58 AM

Originally Posted by Birdie

I am very impressed and you're fortunate to have made the connection for yourself in such a short time. Easy to confirm in hindsight but you did it up front. I need a doctor, are you accepting new patients?

LOL. Glad I can LOL about it now. I was really scared so that inspired me to do a ton of research. My friends were upset with me because I accessed my own blood test results via myehealth and spent countless hours researching (self diagnosing). The first doctor didn't even tell me about the PR3-ANCA. She told me my blood work was all good except a slightly out of range rheumatoid factor. High normal is 9 and I was at 10. Basically normal. Something told me to sign up for myehealth. Takes a week to receive a password via mail for the site. Big red flag alert for PR3-ANCA when i looked up my results. Then I started pushing and researching. The first doctor (who was a specialist) said there was no way I had GPA. That I "just had the sniffles" and that it is "a rare bone eating disease". Symptoms kept coming on strong so I knew I had to find out definitively what was going on.
Anyhow I am super grateful. Something told me to keep pushing. Normally I just take doctors for their word and professional judgement.
If you look on the right sites the info on the internet is not bad. Contrary to what everyone was telling me.
Thanks for the support. It feels good to talk about it with people who get it.