New Member Introduction

[Gail Lee]

Hi, my name is Gail Lee and I am from Michigan. I happened to stumble on this website last night while looking for information regarding flareups. I initially became sick in July 2011. I spent the next 7 months going from one specialist to another (ENT's to allergists - 5 in all) and just kept being diagnosed with Sinusitis. I was on a wide range of antibiotics and on and off again prednisone for those 7 months as I steadily got worse. I was able to get in to an ENT/Sinus specialist at the University of Michigan in February 2012. I feel Dr. Zacharek saved my life. Within 1 1/2 hours of being in his office, I had a diagnosis. It had to be confirmed, but he was right. At this point, I could barely see as my nose was so swollen that only an old pair of glasses would fit. Bright lights bothered me so bad and I had lost hearing in my right ear. I was a mess, but when I left his office I was on the road to recovery. I had to go back the following week to visit the Rheumatology/Internal Medicine Department. Tests were done to confirm Wegener's Granulomatosis (GPA) and I was scheduled for my first Rituxan treatment. I am currently off of Predinsone but am still on Methotrexate. I believe that I was on Prednisone from the time I was diagnosed for 16 months. I feel much better now, but I am bothered with fatigue. Some days I just have to take a nap. I also seem to get skin rashes - mostly on my fingers and on my feet. I hope to learn a lot from joining this Forum and hope to be able to contribute to it too. I am an animal lover with 3 dogs and 2 cats. I also love to travel and just arrived home from a short time to Kentucky.
I am also a member of the Vasculitis Foundation and attended their symposium in Philadelphia in July 2013. I plan on attending the next one in 2015 too.:biggrin1:

[Wegetarian]

Welcome Gail Lee!

Good to hear you are feeling better, and sorry that you still have fatigue. On the bright side a nap when you can take it is pretty awesome, isn't it :) I know I love mine.

[Pete]

Welcome to the forum, Gail Lee! This is a great place to get questions answered and good advice from people who are experiencing GPA. Sounds like you're in good hands at the university up north.

Fatigue is a part of this disease - especially when it's active. While being off prednisone is a good thing overall, your body may need some help keeping inflammation under control. If nothing else, this disease is insidious and symptoms can be very vague. Stay vigilant!

Good luck and better health.

[NikkiNicole]

Welcome welcome welcome!!!
Our stories sound vaguely familiar as all of my woes began with sinus issues. As a girl who had NEVER had sinus infections or allergies, it was rather odd for me to suddenly have the sinus infection to beat all others. It never went away. Alas, my doctor wasn't as on board with agreeing that it was Wegener's.
It sounds like you have a good care plan, and a good team. I am on MTX injections and tapering off Prednisone. I hate that blasted medicine with every fiber of my being. I can't wait to be done.
Fatigue is also a part of my daily life. I think we all have it. We must learn our "new normal", maybe we can't run as far or as fast or not at all ... but we can live.
Welcome again, there is no better place!

[mishb]

Hi Gail,

I'm glad your search brought you to this forum........it is the place to be.

Yes, your tour to the land of Wegeners sounds very familiar indeed - familiar to many of us.
It is a tour with many hills and valleys, roundabouts and stretches of road that seem to go on forever.
We are all on similar tours yet different in many many ways. Different medications, different symptoms and different stages of health.

Take care of yourself and .........

[annekat]

Welcome Gail! I'm sorry you didn't find the forum sooner, but am glad you are here now! You may find yourself unable to stay away from it and becoming quite involved, if you have the time. I don't know what I would have done without it since learning I had Wegener's. I, like Nikki, had never had sinus infections in my life, or an ear infection, which appears to have signaled the start of it all. Like you, I went for many months just being treated for sinusitis and allergies. When it finally went into my lungs, things became serious enough to lead to a diagnosis, which was done via nasal biopsy. I was started on CTX and pred and later switched to MTX, along with Bactrim 3x/wk., and am doing quite well. The lung symptoms are long gone and the nasal stuff is much improved, though will never clear up entirely, I expect, due to permanent tissue and bone damage to the sinus area. The fatigue does last, maybe indefinitely, but mine has improved, I don't get as tired, and I have more stamina for physical activity. I think most of us find, though, that we need to pace ourselves, we may feel like we can do anything, and then do it, and then find that we pay for it later in lost energy. However, as Wegetarian says, our naps can be very enjoyable, and it is nice to have a good excuse to indulge in them! I wish you the best and hope you will continue to post here and keep us updated.

[Alysia]

Hi Gail Lee,
each time a new member arrived, one who is a new weggie, I feel sorry for him... I remember how confused I was at the beginning... frightened and lost, depressed and so lonely... (not that I'm not feeling so from time to time)...but, I wish I could have find this place years ago... being here, holding hands, making it much easier to fight this bloody-wg .... and win. welcome :hug1:

[rebekah]

Welcome to the family, Gail. There is so much information here you're bound to learn a lot, and we can learn from your posts too. Sorry you have fatigue, naps are a daily thing for me... I actually look forward to nap time. Glad you're feeling better and able to travel though. I hope you continue to improve.

I was also at the symposium in July and learned so much... I hope to make it to the next one too. :)

[drz]

I like my naps too and often need one to maintain an ability to function.