Doug W

[Doug W]

I started feeling sick about June 2009 about the same time I cleared a bunch of flowers for my neighbor, had an allergic reaction, then had to climb under the house looking for the reason the A/C wasn't working and got a faceful of insulation, dust and whatever else was in there. So the doctors tested for hantavirus, valley fever and did chest exrays and thought I might have cancer since everything else came back negative. All my symptoms involved only my head: nasal congestion, plugged up ears and headaches. Nothing below my neck. I never lost my appetite and never stopped eating but started losing weight. The last several days before being diagnosed I was losing 2-3 pounds a day. In total I lost 45 pounds, muscle bulk and most of my strength. I could barely walk into the office of the doctor that finally figured out what I had, based on symptoms including my bloodshot eyes. This was 1 year to the date I started feeling sick. I was so close to being dead that I was digging out my fishing poles to go fishing onelast time--provided I could walk to the stream. Hurray for prednisone. Just 3-4 days after taking 60 mgs, I felt like a new man. I tried several pills to replace the prednisone, but I had bad side affects from all of them. So I've done 2 rounds of retuxin and the doctor wants to do a third. My body doesn't want to go into remission. In fact, last summer the wegeners created so much crud and pressure around my brain that I started having seizures. I was in the hospital for 3 days getting IV doses (1,000 mg) for 2 days, then home and back to 60 mg, then I'm finally winged down to 10 mg where I'm staying for now. That was the reason I had round 2 and will be doing round 3 shortly with retuxin. I was blowing HUGE green & bloody snot out of my nose and my right ear started draining crud. The first tube the ENT put in my ear plugged up. He removed that one and put a bigger one in. That plugged up but the pressure blew it out and now the crud drains out the hole it left. On the 28th of July, I found out my Aortic tricuspid was only a bicuspid (in my heart). So I had open heart surgery for that and that night I had the last 3 (so far) of 7 seizures in less than 3 hours. So besides prednisone, I am also on 300 mg of Zonisamide, blood thinners and heart meds. And I feel like I have my life back. I just wish I could get rid of this crud that keeps draining out of my ear.

[Dirty Don]

Welcome Doug, what a handful of stuff! Glad you found us lurking around out here...lots of good peeps, informed, experiential, and just plain caring! Sounds like things are better, but not the crud...hmmm. Do you have WG experienced docs or are yours consulting with some? Good luck on the ear thing as well as the WG. Best to you.

[Doug W]

The Dr that diagnosed me shared office space with a Dr that has some experience with WG. He is now my dr. The Dr's in Phoenix knew nothing; I finally found a Dr in Flagstaff that figured it out. Thank you for your support.

[Dirty Don]

I'm in PHX, go to Mayo. If you can access them, they've been taking care of me for nearly 3 years now. They've got it right on the head for me. Maybe your docs can consult with Dr. Mertz at PHX Mayo, Shea clinic. Best to you.

[Doug W]

Thank you for the heads up on that. I will talk to my doctor about that when I see him in June.

[mishb]

Wow Doug, I'm so glad you are here with us - literally.

It's just crazy what this weird little disease can do and you certainly got your fair share.

I hope you can get to go and see Dons doctors at Mayo, he speaks very highly of them and his care.

Best of wishes to you

[annekat]

Welcome, Doug. I'm glad you made it through all that and are here to join in our discussions. Please keep us updated!

[windchime]

Welcome Doug, this is great place to come if have this disease. Lots of information and wonderful people that will listen to you whether you want to rant, talk or ask questions. Feel free to ask anything. Someone will have an answer or an opinion.

[renidrag]

Why would you go off Prednisone?
and you are back on now ? Who are you seeing for treatment ?

[Alysia]

welcome Doug :hug1:what a rough time you have being through :sad: Thanks God you have survived. I hope that you will soon get into long lasting remmision..... take care and update us.

[Doug W]

Prednisone has some negative side affects with on-going use so we tried winging me off of it. But after finding a new increase of inflammation around my brain and mega doses of prednisone, I winged down to 10 mg and that's where I've stayed. I don't know if I was ever in remission. But the Dr is talking about another round of Retuxin. My next appointment is in June and that's when I'll find out for sure. We're trying to find a place that's less expensive than the hospital, but haven't had any luck so far.

[Dirty Don]

Where are you located? Perhaps some on here know of a clinic or such near you...

[ingemlb]

Welcome to the forum Doug. That must be incredibly scary having the inflammation in the brain. I have the crud in the sinus area too and my first sinus symptoms (many years ago) involved the ears. The tubes leading to the ears were totally blocked and I needed grommets for a few years to get rid of vertigo.

So maybe the crud coming out of your ears is also coming from the sinus area?

A lot of people here do regular sinus rinses. But not sure if you would be able to do them if you have a hole in your ear. Someone else may be able to advise. I know when I do the rinsing much less stuff ends up running down the back of my throat into my lungs.

I am on Pred 30 mg and Methotrexate 20 mg and for nearly 3 months now have also been taking Bactrim. At first I noticed a great improvement in the sinus area when on the Bactrim however it's getting worse again so not sure now if it was just a coincidence and that the pred was helping with it.

When you take a lot of different stuff it's difficult to know what is helping and what is causing flares.

I am from Australia so can't advise on doctors or clinics. Hope you find somewhere good and affordable.

[annekat]

A lot of people here do regular sinus rinses. But not sure if you would be able to do them if you have a hole in your ear. Someone else may be able to advise. I know when I do the rinsing much less stuff ends up running down the back of my throat into my lungs.

I have a big hole in my eardrum and I do regular sinus rinses. My Eustachian tubes are blocked enough that the rinse doesn't go into the ears, though I do have to exercise caution and be somewhat gentle with the pressure, just in case. I guess that would be true, anyway, even without the eardrum hole, as we don't want the rinse going through the e-tubes and into the middle ear. It has happened to me in the past occasionally with no particular bad results, but I think it is something to avoid.... it would put extra fluid into the middle ear, for one thing, which we don't want. If I am understanding things correctly.