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Terry's Story...

First, I have a 25 year history of a severe allergic reactions to specific blackflies and have had to take prednisone packets each time.

Now, having lived in Ohio and now SC, I am also reacting to fire ants. Yuk!

Last July I got some contact dermatitis on my wrist & then a boil on my underarm. My pcp at the time, put me on antibiotics & said the dermatitis would just go away itself. It didn't but the boil did. I started my own 24 mg prednisone packet kept for emergencies, because my pcp didn't think I should take them. I was going from er to pcp office & being given a low dosage each time and it never worked for my problem.

A few week's later I got a few blackfly stings on my face. I thought I could get rid of them by just using Benadryl. No way!! So now I still have dermatitis and some insect stings and major symptoms of allergic reaction. I still take Benadryl. It doesn't work. I try a prednisone packet again. It doesn't work.

Finally, after one whole month of going from ER to pcp trying to get them to give me a high dosage of Pred, I find an allergist who lets me try a high dosage. Voila! The high dosage works but now I'm addicted to prednisone & my adrenal gland isn't working. So I start to taper prednisone and have side-effects that are unbelievable. So now the pcp and allergists want me off prednisone asap and I can't. They dismiss me because I can't do it as they say.

They don't even care whether what would happen if I did.

I find a pcp finally who listens to my complication & lets me taper slowly. Remember, if I don't even have the prednisone to taper slowly, I could die. I get all the way down to 15 mg and start to feel good & do some gardening (I'm stupid) and get a fire ant bite on my ankle. I have a serious reaction. Have to go back up high dosage and start to taper again. I do this and it works, except now I'm back up on prednisone and tapering again. Between then & now, I also have a reaction to hair dye. This time I do a one day burst and go straight back down. It's very painful.

So it's Xmas now and I'm down to 18 mg and still going very, very slowly. I should be off in mid Feb. I've put on 20 lbs but I feel much better as I'm tapering. I finally see the light at the end of the tunnel.

Because of being on prednisone for so long, I have a a great distribution of fat on my abdomen, upper neck, chin & back. It's depressing. I don't what the end results will be after getting off prednisone, but I had no choice to begin with.

I just found a good allergist last week who listened to me & said, after your off prednisone, let's do one reaction at a time. He wants me to try, after I get a severe reaction to take 60 mg for 5 days & off. I was glad to hear he had a new idea of what I could do.

Update 12/27/02: I got off the tapering of prednisone after 8 long months just last February. Went to Florida & felt A-okay. Two month's later, I had some dental work, and got very sick & asthmatic. Went to ER, back on prednisone. Again off. On and off til August. When I'm off I'm very vulnerable to everything. It took til just this November to get off hopefully for a longer time period. It's been a little over two months. Of course, I had thrush; sinus infection; sinus infection; mold inhalation & asthma attack & vocal chord dysfunction.

When I accidentally inhaled that aspirgillus mold from an old box of photos from a damp basement in Ohio, I became severely sick. My whole body was HOT. Slept for 2 nights in wet towels. Knew I was real sick. But if I went to the ER, I'd be back on prednisone. This was in Nov. 02 and after two weeks of this, I took a high dose of prednisone on my own to reverse the terrible asthma & wheezing. Took it for 3 days. But am still left with some bronchi constriction; sinusitis.

I never thought it would be this hard being off prednisone. I think I expected to feel "normal" more quickly. I've been told I may never be "normal."

Each week I seem to get sick from something. I'm hoping as time goes on I'll get my immune system working better & better.

It's a double edge sword for me. If I want my bronchi constriction reversed, I'd have to take prednisone (don't know for sure if it will even work. I have to see a new pulmonary person next year). I don't want to take more prednisone so I can't be as active as I was. I love and need exercise. I tire just from walking too much and get sick. I think I've finally got bronchopulmonary disease (which can occur if you have too much inflamation too often in your lungs & bronchi.)

At night in bed I can feel a pain right in the center of my chest (probably where my bronchi go off in a "V" to each lung). And I can't take a real deep inhalation and wheeze on exhalation. It feels permanent. My allergist or GP won't touch it because only prednisone can help it.

Some of the lasting effects of prednisone for me are: osteopenia (almost osteoporosis) upper spine; asthma; reflux acid; sinusitis; legs still can be very weak some days still; straie.