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My daughter has been on prednisone since October, 2006 -today is ...

Posted at 9:55 PM on Jul 25, 2007 by marysunshine, #22536
My daughter has been on prednisone since October, 2006 -today is July 25, 2007. She is a 35 years old with asthma and allergies. Originally the pulmonologist thought she had ABPA (Allergic Bronchio Pulmonary Aspergelosis) and put her on 60 mg daily. This year has been a nightmare for her. That original diagnosis apparently was erronous, but she was kept on the high dose for breathing issues, with instructions to lower it as she could. As of today she is on 30 mg. daily. Side effects? So you know she is no "loser", she is a PhD in Biomechanical Engineering, has two patents to her credit, has spoken at numerous medical conferences (for vascular surgeons and cardiologists), and has had countless articles published in medical journals. Now she can't concentrate much less sit still, has not read a book in months (she used to read at least one book every week), she has two research publications that need to be finished but she can't focus on the work, is totally exhausted and needs to rest after only a couple of hours of mild activity, has a face she has described as looking like a mongoloid. Her beautiful, big, blue eyes are slits in her face. Clothes that fit yesterday wouldn't fit today - and those that fit today won't fit tomorrow. She craves food in the middle of the night and said she usually eats 2 bowls of cereal. She has terrible pain in her torso. Her esophagus has become so eroded she is on 6 different meds for that, and as a result cannot eat salads or raw fruits or anything that might irritate the lining of the esophagus. Her body is covered with huge dark bruises. The latest side effect made evident happened this past Saturday night. She fell striking her shins on a carpeted step. Her skin has become so thin that it actually burst open. She said it reminded her of when we'd blanch tomatoes in boiling water to peel them, and how the tomato skin would just burst open. That's how her leg was. That little fall cost a trip to the ER for stitches, tetanus shot, and antibiotics. Her husband is a career military, so since they married 1 1/2 years ago she's lived in 4 states, there's not much history among doctors. She lives now in Kansas and has started seeing specialists through the university there. We just wish she could go to Mayo Clinic for complete evaluation, but unfortunately military insurance doesn't seem to cover the best.
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Reply over 2 years ago on Jul 26, 2007 by riogran, #908

I too was diagnosed with the same allery along with my asthma. After a 5 day stay in the hospital and being treated with 5 antibiotics, nothing worked on the aspergillias. So I was put on 80 mg of prednisone and sent home to wean off after the next couple of months. After 10 days I took every 2 days to wean off on my own. My gums receeded, face swelled, eyes like slits, cheeks like chipmonks and one leg swelled. next visit to the dr was told I am not allergic to aspergillias but I must wear a full face mask to garden! Tomorrow is appointment with pulmonary dr and next month I made an appointment on my own to the University of PA Lung Hospital.
Low does of prednisone (5 mg) of pred. never gave me a problem but 80 mg ruined me. Be careful out there!

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Reply over 2 years ago on Jul 27, 2007 by 47140, #923

I am so sorry for what your daughter is going through.You stated that she is having terrible pain in her torso, it very well may be her pancreas as I have found Prednisone can cause the pancreas to become inflammed. Hope things turn out well.

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Reply over 2 years ago on Aug 02, 2007 by macandtosh, #1005

My husband is retired military and we have Tricare standard (had it when he was also active duty). You can go almost anywhere with that. In fact, I am seen at Johns Hopkins Sarcoidosis Clinic in Baltimore, Maryland, for Sarcoidosis (I live in Florida). I have been on prednisone for 3 yrs. Maybe she has Tricare Prime which is bad! You have to have a referral for everything and no one wants to accept it b/c Prime pays very little. Hope this helps!

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