It can sure be frustrating. There have been times that Dr Seo didn't think it was Wegs and it was. The Wegs dog can even sneak by the specialists.
It can sure be frustrating. There have been times that Dr Seo didn't think it was Wegs and it was. The Wegs dog can even sneak by the specialists.
Pysborg, when I had my lung nodule I failed my lung test. I didn't feel that bad. I was put on inhalers, I took them for a month or so. I was on 60 of pred and they added cellcept to the other bunch of meds that I took. I improved in time, it was the Wegeners...they confirmed it when they removed the nodule.
E.
They are sure my nodule is WG related. Definitely not cancer. I already spent six wks with the oncologist. Another CT scan in July to see what is happening with it. They don't intend to remove it if the med works. Maybe the RTX helped. We'll see soon. How do they remove it?
J. Mike Milliorn, Santo Texas
Diagnosed Jan. 2011
at the Cleveland Clinic
At the time, the docs thought it didn't look like a wegeners nodule, but I didn't have a wegeners specialist at the time. So, I was told by a bunch of docs to remove it so they can properly diagnose me. Oh well, glad it wasn't cancer. Your lucky you didn't have to go through lung surgery. I am sure the lung nodule will strink and disapear.
Mike, they don't normally remove lung nodules caused by Wegs. The meds will shrink them and they'll disappear. It takes time.
So I'm going on 3 weeks with a rash now. Hives...etc. When my PCP bumped up the Prednisone it went away, as I'm dropping it back to my normal levels it's getting worse. I'm suspicious that I've developed an allergy to Bactrim. I do seem to note more itchiness on the days I take the bactrim (today for instance). I have a call in to CC to see if I should try something else maybe? I know Bactrim is the favored antibiotic though.
It all developed after I got a huge dose of antibiotics with my hernia repair. I suspect it might have pushed me over the edge.
I really need to get back off the elevated Prednisone as it's seriously making my head woozy this time around. Unless that is a reaction as well... LOL
~ Bob
Rash is mostly cleared up, but comes back every day at work. I'm thinking I'm allergic to something, I suspect the refinery across the street from our offices, but everyone acts like I'm nutty.
Pred is back down to 9mg, next week I drop to 8 again. I hate the fact that I had to restart the taper, but it's my fault.
1 week until the bronchoscopy. Then I'll know what is going on with the lungs (I hope). It's weird I hope they find it, and at the same I'm I have to hope it's nothing too serious (though that would probably make it harder to find). I am nervous about the Bronch procedure too, just scoping my Trachea was rough for me.
What I find oddest about the whole thing is that I have good O2 sats, and I can exert myself a fair amount before I have any problems. The issues always arise when I push that hair too far and get that ragged feeling weezing, then it all goes down hill fast for my breathing until my chest calms back down.
~ Bob
After the fiasco of the last two months I'm once again back down to 20mg Pred from 40. Dropping to 15 at the end of the week. RTX seems to have helped with the Bronchs so far. Funny found my original post out here and discovered I was so happy not to have Lung involvment..when apparently I did lol. They have me on a CPAP machine now to help breathing while sleeping...seems to help a little, but it almost seems to be causing some issues too. Might just be proper airflow to the left lung finally.
~ Bob
I'm just going to 15 tonight after my flareup in August. It has taken this long to get back down to where i was. I'm doing ok on the Cellcept so far. I can't have any more RTX for at least six months the doc said. If the Cellcept works, sometime next year I should get off all meds--if there are no further flareups. I hope your condition continues to improve without further complications, too. Maybe we'll both be celebrating remission in 2012.
J. Mike Milliorn, Santo Texas
Diagnosed Jan. 2011
at the Cleveland Clinic
We share the same Doctor I think Mike Hopefully we do hit the remission soon. After the fact I don't think I was ever in remission earlier in the year. I think it wasn't until the attempted dilation that they realized my problems were down deeper in the airway. Weird how things work out. I know my left lung is never going to work as well as it did before due to the cartilage breakdown in the Bronchial tube, but just praying it doesn't get into the right side. If I get into remission it shouldn't.
~ Bob
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