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Hi! I was diagnosed with wegener's in Dec. 2007. I was hospitaliz...

Posted at 11:56 PM on Feb 27, 2008 by debbiewhite9221, #27562
Hi! I was diagnosed with wegener's in Dec. 2007. I was hospitalized for 6 days. When I left the hospital I was taking 80mgs of pred's. After 8 weeks I am now down to 60mgs.{per day} I found it amazing how the doctors didn't inform me on the very well on the side effects of pred's. Plus bactrim,actonel,protonix,vitamin-d and cytoxin chemo once a month for six months or more.{i have had 2 four hour infusions,getting ready for my 3rd one in a few days}. I have severe moon face,buffalo hump. My neck and throat feel full. Almost as if I was drowning.I've gained 25 lbs.,I have severe pain in my legs and knees,my back between my shoulder blades from the massive hump that I have,which by the way makes it hard to sleep. I am puffy all over,I feel like a huge sponge in the ocean!!!!! I only hope that when the med's are over I will return to normal. I cry a lot because of all the changes to my body! I don't feel like getting out, afraid people are laughing at me, my clothes look horrible,and my memory has been fading! I sometimes feel like I'm in the "o" zone. I am grateful for the wonderful care my doctors have given me,I just wish that they would of prepared me a little better for what I was facing for possibly a year! For every one out there that are facing all types of effects,just remember not to forget who you are and things will get better.
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Reply 8 months ago on Mar 30, 2008 by julz, #6261

HI I ALSO WAS DIANOSED WITH WEGENERS/MICROSCOPIC POLYANGIITIS DEC 28TH 2006 I AM NOW ON 7MG OF PRED.AND I GET A SHOT ONCE A WEEK OF METHATREXATE THIS HAS BEEN ALONG HAUL FOR ME ALSO. I WOULD LIKE TO TALK TO YOU MORE ABOUT OUR DISEASE.

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Reply 7 months ago on Apr 16, 2008 by sandy146, #7284

Hi Debby
Thankyou for sharing your journey on Prednisone. I am having allot of emotional ups and downs because of the side effects. I hate how I look and feel embarrassed to go out. If I didn't believe in God I think I would have ended my life at times. Your email brought tears to my eyes but tears of some sort of joy knowing that someone else knew how I felt and shared it. I've felt very lonely this past year and since I've been sick most of my friends hardly call me anymore. I use to be the strong one, the listener and now that I'm ill and homebound allot the phone hardly rings anymore. I know that I will get through this because I'm strong. God Bless You for your emal.

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