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pberggren1
02-06-2010, 11:27 AM
I cannot taste or smell anything. It has been like this since Jan.17 and periods berfore that starting back in September. I dont want to eat anymore, it just feels like a chore. I know I have to eat for nutrition, fiber, etc. but it is driving me crazy that I cant taste food or even smell it. Does anyone have any ideas regarding this strange dilema? I went through this when I was first diagnosed back in 2003. Any help would be greatly appreciated. I see my ENT on the 15th again.

elephant
02-06-2010, 12:32 PM
It means you have a Wegeners flare going on. I have partial taste right now and had to increase my prednisone to 10 mg from 5mg. If it starts to get worse i will be calling the WG specialist. I will be seeing a couple more this month. You are having alot of inflammation and sometimes it can be an infection.
Phil, are you still having those chunks? How much prednisone are you on? Recent changes in the medicines?
Sorry Phil, this really sucks. I understand!

pberggren1
02-06-2010, 06:23 PM
Thanks Elephant,

I'm not on any Pred right now. I take Cellcept, 1500mg twice a day and Cotrimox 400/80mg once a day and Allendronate once a week for bone loss. I was taking the Cotrimox every other day but my Rheumy put me on it every day starting Jan.30. I am still having the chunks but it does seem to be getting less infrequent and the chunks don't seem to be as hard as they used to be. I see a Pulmonologist on Monday and the ENT on Friday so maybe I might get some more ideas from them.

Jack
02-06-2010, 07:09 PM
I had this problem for a period of about five years, but it did not indicate a flare in my case in fact I was in good solid remission at the time. It eventually went away for reasons unknown. But I also had the same problem before diagnosis when the disease was raging in my nose and sinuses.

None of that was of much help was it? ;)

pberggren1
02-06-2010, 09:26 PM
Yes it was Jack. Just knowing what other people have gone through helps me.

elephant
02-06-2010, 10:35 PM
It is so true Jack it really is hard to distinguish a WG flare or other weird thing that is going on. Phil, I am only going on my sinus symptoms and hoping the prednisoe works. Glad your chunks are improving Phil. Hope you don't have to go back on Prednisone. Phil, I'm on Cellcept 1000 mg twice a day and the kidney doctor has decreased my cyclosporine to 50 mg twice a day. Were going to try to eliminate the cyclosporine and taper slowly. My dream is to get back down to 5 mg of Prednisone. :)

Sangye
02-07-2010, 04:53 AM
I think the fact that your chunks are improving really proves that this is a flare, Phil. I hope they can figure out a good plan for you soon!

jola57
02-07-2010, 04:34 PM
Phil, I am just the opposite, everything smells and tastes good (too good) it never used to be this way, I was a finicky eater