Weaning pred question

[Al]

I don't really have a proper stomach...so prednisone has never caused much upset.

Bob, Pred is still a nasty drug, even if it doesn't make like immediately miserable in a direct way. It still seems suspect to me.

Al

[Psyborg]

Just weird that this just started. I've been on a bouncing dose for 2 years now, but the stomach issues just started in the last month or so. I'll follow up with my doctor.

[Sangye]

Debra, unless you have clear-cut granulomas or other masses, the CT scan (or xrays) will not indicate too much. it might indicate "gound-glass infiltrates" or similar, but it will have nothing to say about hemorrhaging. For that, a bronchoscopy is usually required, for a visual confirmation.

Al

Al, CT scans show hemorrhaging. That's how my case was dx'ed initially. CT has always been accurate in showing if my lungs are bleeding. I only had a couple of small granulomas several years after dx. I'm not a granuloma-maker.

[Al]

Al, CT scans show hemorrhaging. That's how my case was dx'ed initially. CT has always been accurate in showing if my lungs are bleeding. I only had a couple of small granulomas several years after dx. I'm not a granuloma-maker.

Sorry-You are right. In my case, however, the CT scan did not show hemorrhaging until the blood was gushing, and it showed clear after the PEX had done its magic, so the scan had neither predictive value nor suggestions how to proceed. I do know that the pulmo was somewhat surprised that there were no granulomas, but "only" ground-glass infiltrates. (It is, by the way, the no-granuloma situation along with P ANCA and only minor upper airway involvement that leads me to favor an MPA diagnosis rather than classic WG,)

Al

[Debbie C]

Al. what is groung-glass infiltrates ? Sorry to keep asking questions..maybe you should just write a book on this stuff( one in plain english so I can read and also show my docs !)

[Al]

Al. what is groung-glass infiltrates ? Sorry to keep asking questions..maybe you should just write a book on this stuff( one in plain english so I can read and also show my docs !)

Ground glass infiltrates, or ground glass opacities, is one description of lung xray presentation. On the scan, presentation is kind of hazy, like ground glass (or wax paper). This is pretty nondescript, and can suggest a multitude of diagnoses. Generally, though, it indicates either inflammation, or interstitial lung disease, or both. For me, these "hazy" possibilities surely delayed my WG diagnosis by several months, as the pulmos involved assumed ILD, rather than inflammation, and went barking up that tree for a long time before I decided the raccoon was up another tree altogether.

Al

[Debbie C]

Thanks again Al for explaining things to me.

[gunnyl]

I took my last pred about 2 weeks ago and I hit the wall the last couple days. I think it is finally getting out of my system and man the fatigue reminds me of when I was sick and starting chemo. When I got to 5 mg my doctor brought me down 1mg at a time. I pushed a little faster than her instructions and I am off now but it's not been easy by any means. Hoping the fatigue will wear off in the next week so I can get back to myself and start working out again. Don't have the strength right now. I was good for the first week with no pred but I am really feeling the effects now. I won't ask how long it takes because everybody's body is different and I have bounced back pretty quick through most of my transitions.
I'm down to 189 lbs, was at about 210 when this whole thing started. Never gained any weight from the pred so that was a good thing. I am only taking MTX and Folic Acid now...was able to ditch the BP meds too! Since my weight dropped so did my BP.

[pberggren1]

You may have weaned too fast gunnyl.

I'm curious where DFW is?

[gunnyl]

pberggren1, I did wean off faster than I was supposed to and I knew I would pay for it but I have always been about pushing myself past limits. I can deal with the fatigue for a few days! I have been juicing and eating a lot of organic fruits and vegetables and my labs have been clean for several months now. I take my meds but I add to the recovery and my nefrologist is so impressed he went out and bought a juicer!
DFW is Dallas/Fort Worth in Texas.