WARNING!! Fast Pred Taper - Adrenal Crisis!!

A while back I decided to take myself off of prednisone. I weaned myself down to 10mg and then quit. BAD IDEA! I didn't flare, I had an adrenal crisis. Scarey and deadly! I started vomitting, my pulse stayed high and I was in and out of A Fib, my legs were swelling all the way up past my knees, my blood pressure dropped real low and I was extremely short of breath and exhausted. Thank God I got help in time. Just wanted to let you guys know and admonish you to follow your docs advice on this stuff! Judy

(post edited to change topic title so more members will benefit from this post)

Post Edited By Moderator (AlwaysRosie) : 3/7/2008 7:35:34 AM (GMT-7)

Oh my that must have been terrifying! I am glad to hear you made it out ok. I haven't started Pred yet but will be soon so I will keep that in my little "to remember"book. Thank you for caring and informing others!

Judy, I hope you are feeling better now. *Phewwwwww!* What a scary time!!! I hope you will edit the title of this topic to include something like "Fast Pred Taper - Adrenal Crisis) so that others who take pred will be more likely to read it. Many members on prednisone have no idea how the adrenals are affected when we taper too fast. Thanks for posting and . . . . WOW what a scare! Blessings!

I am glad you are okay. I am also glad that my fast tapers have always gone well. I hate prednisone but at the same time, I know at 20-40mg I would feel great, but the long term effects are not something I need to deal with.

I hope that this doesn't mean you will need pred for life, though I have heard that some people it kills the adrenals.

You just hit the pencil in the upper right hand corner of your original post, then change the Subject line. Or any moderator can do it for you.

Oh Judy, that whole experience must have been really scary for you. Thank you so much for posting about it to give us all a reminder about how slowly we need to taper. How are you doing now?

Hi Judy.  I want to thank you for telling us about your fast taper experience.  I'm just the type of person who would stop pred too quickly.  I'm soooo glad you're okay!  Love, Butterflake

DO NOT taper prednisone (or any medication) without the express approval of your doctors! This thread is about the very real and very SERIOUS results from trying to taper without medical supervision -- The whole thread is warning AGAINST it. As the original poster said, she was deathly ill and having heart fibrillation's -- which can KILL

Suzanne
I know when I talk about a pred taper it is because my doctor said to try it. My rheumy prefers that I taper according to how I feel when the dose is lowered rather than on a set schedule. When I am wavering between going down or staying a little longer at a dose I often come here for advice. I know some people have rheumys or other docs who dictate exactly how and when a taper will be done, mine will tell me when to try but always says my body decides if it will work and how fast it will happen. I like that because I have read about some people here who the taper makes them feel horrible but their doctor expects them to go down again anyway well before they would do so based on how they feel. I also like that she says if I do poorly then the taper needs to be stopped for a while longer. I prefer not to make myself sicker just because of the goal of getting me off prednisone fast was set, unless it is absolutely necessary like it was back in Jan. I would have taken that taper much slower if it weren't being done for a serious problem. I never change any other medication without a doctor's advice. Heck my rheumy often asks me if my Imuran dose is at the right level- I do best at 150 but we try to keep it at 100. When we tried to d/c it and I got worse she had left it up to me to decide if I needed to go back up again and stay on it. Which I did and notified her about what had happened. I went off Imuran and was on pred instead for the first part of this pregnancy but for me the side effects of prednisone are dangerous after a while- my bp rises steadily- so when I said I needed to go back on Imuran she was fine with it.

You will notice that my rheumy may listen to me on how I do on a specific med or dose but I do not change dosage or med without her guidance even if it is a self regulated taper I still have her on board. NEVER CHANGE YOUR OWN MEDS WITHOUT A DOCTOR TO SUPERVISE!!!!! That is how people end up nearly killing themselves and in worst cases actually killing themselves.

Suzanne, I would recommend a rheumy anyway because there are conditions related to lupus that can become a problem that they are best equiped to handle. You should at least see one so that if/when you need one you already have an established relationship. I know that I likely need to establish a relationship with a nephrologist because 2 of my family members died from lupus related kidney failure- both had been told they were imagining their symptoms until it was way too late.

I know that had I been seeing any other kind of doctor treatment for my RA and sjogrens would have been hard to come by when they finally got to the point we knew what was going on.

I'm glad you're okay now! Tapering pred is no joke, and even with the consent of my doctor I was having a lot of issues. I've had to bump myself back up on the pred a few times because I just couldn't handle it. Sometimes I couldn't get a hold of my doctor but I always left messages and when she did get a hold of me. She told me bumping it back up my original dose is fine. But I have never tried to wean myself from it or any medication for that matter.