Diagnosed December 2018

I was diagnosed with Wegener's in December, I went to my family doctor with a stuffy nose in early October. My nose had been increasingly stuffy and crusty since July or August and would bleed a little bit once in a while. He put me on antibiotics with a 16 day course of prednisone and I got better until the pred wore off, so went back only now my right ear was plugged up too and my left eye was red and irritated. He put me on Allegra and another 16 days of prednisone. I called after a week because my eye was getting worse so he added amoxclav to the mix. It didn't help so after a week or so I went in to see him again, he put me on some eye drops and ordered a CT scan of my sinuses and nose and a chest scan, told me to see my eye doctor who put me on durazol drops. That was the Saturday before Thanksgiving. I made it through the week but over the holiday my eye got worse. I missed work on the following Monday, went to the optometrist who took a look and sent me to an opthamologist. He had me putting the durazol drops in every hour for two day but it didn't help so he sent me to a specialist in Wichita who put me on doxycycline, reduced the durazol to 6 times a day and ordered a bunch of labs and refered me to a rheumatologist because he suspected an autoimmune condition. The eye got better and he released me to return to work on Jan. 3rd. I got the scans on the 12th of Dec and saw the rheumatologist on the 18th. She was able to diagnose Wegeners based on the scans, symptoms and the blood work. My labs also showed antibodies for TB so I'm on medication for that and will start Rituxan infustions on the first of March. I've been tapering prednisone since the 18th, started at 45mg/day dropping 5 mg/day every week since. Seems like life is taking an interesting turn for me. I'm welcome to any advice or suggestions you may have.

Ken:unsure:

Welcome Ken,
You came to the right place for support, and I like to think positive reinforcement. If you are having problems tell us about them. This disease strikes in so many different ways, and chances are someone will read your post and can relate.
I am not a trained medical person, so my advice will be simple. You must have a Rheumatologist and ENT with experience with this disease. Other doctors who are treating you also should be experienced in it. I will NOT say what medicine you should or should not be taking, listen to the doctors who know your personal condition. One thing does not apply to everyone. Do not believe everything you read on the internet. Some is outdated, some may just be the opinion of a single doctor, and all of it could be frightening.
For the sinus problem, this is what I use. I purchased a Sinu Pulse machine from Amazon. It has worked great for me. I also use Flonase and Mucinex. These may or may not be the right thing for you. I have responded beautifully to the Rituxan infusions and also take daily prednisone, which I am trying to reduce.
For leg pain I take a nightly salts bath.
Advances, such as Rituxan have come far since a decade ago. Once under control, you can have a fine life. Stay positive, but remain vigilant. At the first sign of trouble contact your doctor immediately.
During flu season I avoid large crowds. What can be a cold to others, can have much larger ramifications for us.
Above all (and this is the hard part) laugh. This disease is not funny, but some of the things you say and do because of it are. Complaining will only make you and those around you feel worse. If you are working that is a wonderful thing to keep your mind and body busy.
Stay with us. We’ve all been down the path in different ways, and have found great empathy here.
Be Well.
Masha

Hi Ken,

Welcome to the club. I’ll second what Masha said. Some things you may want to consider...

1. Get some exercise. It’s not like you’re training for the Olympics, but get out and walk and do some stretches. I walk 2-4 miles 4-5x weekly and just started a basic Silver Sneakers class to stretch and regain flexibility. I play a little bad golf in the summer and do my own landscape maintenance.

2. Watch your diet. More fresh vegetables and fruits, less sugar and starches. Cut out pop and processed foods.

3. Become more aware of your body. You may want to journal how you feel each day. If anything abnormal starts, be vigilant. If it becomes more pronounced, give your doc a call.

Good luck!!

Masha,

Thanks for the encouragement. I think I was referred to a good Rheumatologist, she said she has treated about 15 Wegener's patients. She is new to the area having come from Philadelphia. I'm in Emporia, KS. I walked in with a small spiral memo-book in my hand for my follow-up appointment and she asked if it was for her. I said yes so she smiled, sat down and proceeded to answer all the questions I had. Also had a lot of questions about symptoms for me. I have a moderately physical job, and am hoping to miss very little work, scheduled the 4 weeks of Rituxan infusions on four consecutive Fridays so if it takes me a day or two to recover I'll have the weekends. I've been using a neti pot with saline to rinse with and saline nasal spray and Neosporin to keep things moist in there. The scan showed a 1 cm perforation in my septum but that was from December and I'm sure it hasn't gotten better. The ENT I saw said to keep things moist and I told him what I had been doing, he thought it was fine. I've still got too much to learn about this but I'll get there.

Have a wonderful day,
Ken

Hello Ken - Sounds like you are on the right road - being correctly diagnosed and starting treatment is vital. A lot of good advice here. I also keep a journal of my symptoms and find it helpful to look back and compare. I find keepng as active as possible is best but with that said always make time for yourself to rest and heal.

Take care

Hi Ken,
I am sorry you have joined the club but welcome! It sounds like you have a good rheumatologist & hopefully things will get better soon.



Sent from my iPhone using Tapatalk

Hi Ken,

Fortunately, you were diagnosed early on.

Since you're taking high doses of prednisone, I strongly recommend checking your vitamin D levels, and get prescriptions for Vitamin D and Alendronate (or something similar) to prevent osteoporosis ASAP (before this weekend)!!

Ed.

Ed,

When she prescribed the prednisone my Rheumatologist told me to start a calcium supplement and also vit D to go with it. I take a 600 mg tablet of calcium with 2000 i.u. of vit D twice a day. Thanks for the heads up.

Ken

I'm glad for you. Your Rheumatologist is doing the right things.
I'm traumatized because my former rheumatologist failed to prevent my osteoporosis.