Prednisone stepdown - side effects (warning - long)

[Guest guest]

Hi all. I am one of your " lurkers " . I try to read most of the posts

as I have time, but I don't post on my own on this particular group

very much. However, I am having some major issues with trying to get

off of these steroids and thought someone may be able to help a bit.

First a little bit of history. I have asthma and other severe lung

issues due to ozone exposures at work. I have been fighting this

since August 2007. I spent about 3 weeks in and out of the hospital

in Aug/Sept with my lungs just continually " gunking up " . They finally

brought in a pulmonologist who diagnosed adult onset asthma and

referred me to a local asthma specialist (who by the way is " the

bomb " . Best dr I have ever had hands down!) My asthma doc was never

satisfied with the simple adult onset asthma diagnosis because of the

quick and severe way it came on (no genetic or historic history of any

type of lung issues) also almost all cases of adult onset asthma are

directly allergy related. Well, I test negative to all allergies he

can test me for except for the drug Sulfa. Also, I do not respond as

indicated to the asthma medications. So, from the time I started

seeing him in October 2007 through May 2008 we tried various

" cocktails " . Even Xolair did not provide any clinical relief. The

only thing that helped were albuterol (in large doses) and steroids.

So, at least once a month I had to have steroid shots followed by a

prednisone step down pack. Then in May 2008 there was an ozone leak

at work. It almost completely shut down my lungs. I nearly died

several times that night. The attack was so severe that it

permanently damaged the muscles in the bottom of my lungs. They are

completely " dead " at this point. Also, I only move air in the top 1/3

of my lungs and my lungs have shrunk to about 35% of their previous

estimated size. From May to the end of August I spent more than 10

weeks total in the hospital. Each visit getting progressively longer,

and all with extremely high doses of steroids. Finally upon discharge

in August. My pulmo decided to keep me on a " maintenance " dose of

60mg/day of prednisone, and send me to the Mayo clinic in ville

to see if they could figure out what is going on. Mayo is actually

where we learned that my lungs are shrinking, but we all agree that I

can't stay on theses levels of prednisone indefinitely. Basically,

since August of 2007 I have been mostly on steroids and since May of

2008 almost constantly on IV steroids (which are even stronger). So

at this point I am full blown Cushings sydrome, steroid induced

diabetes, 100 pounds heavier, immunity is fried, and all of the other

lovely issues that come along with the steroids. However, on the up

side, I can breath. Have to use oxygen only at night, and when the

asthma side of this acts up the albuterol actually works. Best of

all, I haven't been in the hospital since coming home from Mayo in

late September. However, I am pretty much under " house arrest " . I

have to avoid groups - no church or school functions with the kids. I

am also having all kinds of cognitive issues. So, if I ramble or

repeat please forgive me.

Anyway, all of my docs and myself are in agreement that I have to find

a way to majorly decrease the steroids. They are slowly poisoning me

and impacting me way too much. It's a case of the cure being worse

than the disease at this point (although next time I can't breathe you

will probably hear me change my tune! LOL) So, we started me on 15mg

of methotrexate per week (I just got a phone call the other day from

my daughters health teacher. They were studying drugs and Amber

popped up and said her mom was on meth! It was too hilarious! Had to

quickly educate her on the differences between methotrexate and

methamphetamines! Such a sheltered child.) This was one month ago or

so. We also started a step down on the prednisone of 5mg every two

weeks. (55mg/day for two weeks then 50mg/day for two weeks, etc.)

Well, I was due to drop to 45mg/day this past Monday. However, I

started having some major symptoms and by Thursday went to see my

endocronologist. She told me I was in full DT's from the prednisone

withdrawal and also in the beginning stages of renal failure.

Obviously my body really likes the steroids and does not want to let

them go. At this point all of this is totally unrelated to the lung

issue. I have never had issues with the lungs until I get to about

35mg/day or less on the steroids. So, we have now bumped my levels

back up to 55mg/day for this week and next week. Then we will try to

restart the step down at a rate of 2.5mg every two weeks (52.5mg/day

for two weeks, then 50mg/day for two weeks, etc.) If I have

withdrawal effects again I will have to be hospitalized for the process.

My question is has anyone else been through this withdrawal process

and is there anything I can do to facilitate the process. I did

inform my endo that I checked my calender twice and renal failure is

not on there anywhere. I also don't have any time slated for " jail "

(or if you prefer - hospital). LOL! At this rate I am looking at 6

months or more before we even get to a point where we can start

evaluating to see if the methotrexate will help stabilize my lungs as

I have to get the steroids down to at least 30 - 35mg/day for several

weeks.

Anyway, sorry this turned into a book. I just thought it might help

if you guys understood some of the history and the whys and

wherefores. Any advice is appreciated. I am just completely

exhausted but can't sleep more that about 2 hours at a time right now,

and of course my kidneys hurt. The docs are telling me that by the

end of the week the kidney function should be a good bit better

because the failure was being caused from the withdrawal effects?

Thanks for listening.

Madeline