Met another weggie

[Masha]

Thursday was my seventh infusion. The third in the second series of four. As I stated previously the infusion room has twenty chairs and is a revolving door of RA patients, but I never met another Weggie. Like many of us she had recurring sinus infections, and was diagnosed three years ago. It hit her hard, then she got Bells Palsey on top of it. Had to have ear surgery too. Like me, she was told she has had this disease for years. So I wonder how many of us are out there that go undiagnosed for years. Is it as rare as we read?
After this last treatment, I am feeling stronger. One more infusion this coming week, then if I stabilize I will go to two every six months. My steroids are being slowly decreased, until I get to 5.
Have been told by both Rheumatologist and ENT to pace myself. But you all know after the infections, malaise, aches and pains depart we want to make up for lost time.
Would also like to avoid losing more teeth. I have had enough implants that I feel like I am a mouthful of chicklets.
The doctors also stress avoiding infections. But how? I Sinu rinse, stay away from toxic smells, any other tricks?
Take care y’all.
Masha

[drz]

Thursday was my seventh infusion. The third in the second series of four. As I stated previously the infusion room has twenty chairs and is a revolving door of RA patients, but I never met another Weggie. Like many of us she had recurring sinus infections, and was diagnosed three years ago. It hit her hard, then she got Bells Palsey on top of it. Had to have ear surgery too. Like me, she was told she has had this disease for years. So I wonder how many of us are out there that go undiagnosed for years. Is it as rare as we read?
After this last treatment, I am feeling stronger. One more infusion this coming week, then if I stabilize I will go to two every six months. My steroids are being slowly decreased, until I get to 5.
Have been told by both Rheumatologist and ENT to pace myself. But you all know after the infections, malaise, aches and pains depart we want to make up for lost time.
Would also like to avoid losing more teeth. I have had enough implants that I feel like I am a mouthful of chicklets.
The doctors also stress avoiding infections. But how? I Sinu rinse, stay away from toxic smells, any other tricks?
Take care y’all.
Masha

I also carry hand sanitizer with me and use it often and suspect you do the same. That and frequent hand washing are best things to do reduce risk of infections. I use a sinus Pulse Rinse machine which I think works better than the squeeze bottles. I have been on 5 mg pred and 175 aza mainenance drugs for 6 years while maintaining a drug induced remission. I also found a good infectious disease specialist an hour away that trained at Mayo who consults quickly with me over the phone for any possible infections. Just send a pix of possible infections and he will advise or see me ASAP and prescribe what I need. Mayo was not nearly as responsive last year when local doctors thought I needed IV antibiotics for cellulitis. My Rheumy three hours away is also available for consultation and allows me to get local labs whenever I start having any symptoms that might suggest a flare. After awhile I learned to better understand and accept "normal"residual variations in those symptoms without getting too freaked out. It really helps reduce the stress when you have a good care team that you can count on to help sort things out.

My symptoms usually increase when ever I get any infections but I have not needed RTX again so far, just some extra steroids at times. And the aches and pains became minimal as I adjusted to my "New Normal' of often feeling fatigued and I learned to pace myself and accept the required limitations and downsized my life plans. I did have to have six surgeries to repair some of the damage from Wegs and of course numerous root canals and other dental repairs. But life is good and I am still on the top side of the grass enjoying it. Best wishes for better health and more joy for you too.

[Alysia]

Hi Masha,
It is such a joy to meet another weggie for real.
Here on page 3 post 26 I wrote about meeting first weggie https://www.wegeners-granulomatosis.com/forum/threads/3233-ENT-docs-!/page3
The second weggie I met for real is my beautiful Phil. Then we both met Lisa T. And another weggie came to visit Phil when we were in the hospital.


As for keeping germs away, when you are outside the house, dont touch your eyes, mouth and nostrills without washed hands. When eating outside make sure the dishes are clean and the food fresh. I hardly eat outside. If I do, I ask for paper cup to drink from. I also keep the window open allways in work. But it is easy here because the weather is warm.