Finally getting off Preds

[Rose Cozzette]

i am still trying to send the pic but may have to wait on my daughter. my isp keeps adding stuff at the end of the address and it wont go thru. so please bear with me.

[Sangye]

That sounds awful, Rose. I hope you can find something that works for you.

[moyan]

Hua! Water is so wet Sangye!!

[moyan]

Rose, there must be somebody you can inform. Health authorities, yes, they all work together, but if somebody can help you to get to the core(?)
of it. You alone do not have that kind of energy to spend I gather. Hope it soon gets better. Both you and lousy hospital attitude.

[Rose Cozzette]

the good news is that i feel better now after the antibiotics and inhaler, tho i had to stop the inhaler after 4 days as it made me so jittery i felt like i was on pred at 60 mgs again. and also i get to decrease the preds to 15 as of this fri. yahoo! my grandaughters bday party was a succes and all had a lot of fun. and yes, i am still trying to get that pic to go thru, been having a few probs with my comp. lately. so hopefully... how is everyone out there doing? might finally be spring here and stop snowing.

[elephant]

Those inhalers can do that. I hate that feeling too. Glad you had a nice time at the bday party! Spring is coming to a home near you!

[coffeelover]

since the subject is "finally getting off pred" I wanted to let you all know that I had surgery Monday to repair the hole left by the trach (cosmetic in nature) and while she had me open she took photos of my trach. It appears that I do have some stenosis creeping back and the comment from my surgeon to my husband was that I would have to be on steroids for the rest of my life. so that is my new "normal". Pred face, pred stomach Pred weight gain and I have now accepted that. If you only knew how bad I wanted to get off that stuff and the transformation in my attitude regarding the pred you would be amazed. Heck! If it keeps me alive then so be it!
coffeelover

[Sangye]

Was that a Wegs specialist who told you that, Lisa? I know you go to Mayo, but I forget if you see other docs too.

[renidrag]

Coffeelover: Life is good. Maybe you can get to a level where the side effects won't be so bad.

Dale

[Rose Cozzette]

i cant believe how much better i feel now after this round of antibiotics, am doing more, tho still get tired. and the sinus thing. sigh... coffeelover-it sounds like some have to be on preds forever but if it can be a low dose its not as bad, so hang in there. i hate my moon face too. and the shakiness. see the ENT next week and hope to get some scoping done to see what is inside my nose and ear. does anyone else have some hearing loss also? also i filled out my survey for that home health agency and its a good one, told them what they need to do to improve. hope it does some good. getting others to listen abt wegeners has been an uphill battle.