just out of hospital with new meds

[Terry]

Oops! Sorry Jack, the question about U of W was for Davey. My ENT wants me to see a Rheumy at the U of W, but it's a bit of a trek for me to go there.

[DAVEY8105]

Terry, I am seeing Dr Gardner at the UW as well as my rheumatologist here in Everett, WA. We decided a second opinion would be good and I am glad we did because he is an excellent physician (I believe it would be worth your trip). I also grew up in Kitsap County, in Port Orchard, and still have some family there (small world!). I don't personally know any one else with this disease, so it is interesting to me that a couple of members live in this area. Take care!

[Terry]

Davey, small world indeed!! I live in Port Orchard - McCormick Woods. I work over in East P.O. at Kitsap Residences. We're a state-funded agency providing assisted, in-home living for adults with developmental disabilities. The Rheumy that I have the appointment with practices in Olympia and comes to Bremerton twice a month. There is only one Rheumy in all of Kitsap County, and he is not taking new patients, so if I don't like Dr. Choe (pronounced "Shay"), I'll have no choice but to go to UW because nobody's recommending anyone in Tacoma.

[DAVEY8105]

Hello! My brother Joe owns a business in Port Orchard called Farmer George's Meats on Bethel Rd. and I have a niece with a hair salon off of Sedgewick Rd., plus another niece and uncle living in Manchester. My great niece goes to school at Christian Life Center (CLC). I went to school until 9th grade at EPO elementary and Marcus Whitman JH back in the 70's (yikes, I'm dating myself!) Anyway, hope you are feeling well and thanks for your reply!

[Terry]

I shop at Farmer George's all the time! Best meat in town! I wish they sold fresh meat every day, but you can only get it on (I think) Thursday - Saturday. I tend to go there on Friday or Saturday, so I'm not positive about the Thursday part.

I hope you are feeling well too! I'm feeling poo-ish. I've been off Prednisone for about 2.5 weeks now, and my sinuses are already starting to swell up. At least Afrin is working, but I have to use it more often every day just to keep breathing. Eventually, it will quit working. So far, knock on wood, my knees haven't been bothering me too badly, but I can tell they're getting weaker.

[DAVEY8105]

He does have a good meat shop; many of the recipes for sausage, etc. have been in our family for decades! Anyway, I have never been completely off of Prednisone and have taken doses as high as 80 mg. a day (right now I am on 40 mg.)with my lowest dose since diagnosis being 15 mg. My ENT claims that my sinus disease was the worst he has ever seen....I could not breathe, 85% clogged; my cartilage was eaten away and I am left with a "saddle-nose" deformity. I did have to have surgery for reliefe, however, there are a couple of things that he suggested that have helped me a lot with the sinuses. First, is a sinus-rinse kit called "Neil-Med" that you rinse your passages with 1-2 times per day. You can buy this at most drug stores. Make sure you follow directions exactly, though. I have been taking Bactrim (Septra) as a maintenence dose for 17 months to help with sinusitis and Wegener's in general. Also, an electric sinus steamer has helped (also found at drugstore). Of all that I have tried, the sinus rinse is the thing I could not live without! Hope that helps!

[Jack]

Couple of things -

Afrin, or any of the nasal sprays - stay off them if you can! I got into big trouble using them, requiring more and more for less effect and the rebound became far worse than the original condition.

If you have nasal crusting / discharge, use any form you like of the Yoga practice "neti". Simply put, you flush your nose / sinus with salt water and it works a treat. I used to use a 50ml syringe, but there are more delicate neti pots available. It has been used for hundreds of years and can't harm you. Although it won't cure you it will give some relief.

[Terry]

Jack, I tried nasal irrigation, and it turned out to be a disaster! The saline got trapped up inside my head and I couldn't breathe at all the whole night. So the doctor has me using a saline spray - much gentler process. Once they get me on Prednisone, I don't need Afrin but once or twice a day, but when I'm not taking it, the swelling is so bad I can't breathe. That leads to my ears bothering me, and it never ends.