Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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marycanelas 03/16/2010

I was recently in the hospital for about a week for a flare up, I have multiple autoimmune diseases, and have been on prednisone for a few years, never getting below 5 mg between flare ups. I am concerned because the doctors said when they discharged me that my cortisol was only 1, and that was very very low, so they were decreasing my pred dose , tapering me down from the 20 for the flare in the hospital, to 10 then 7.5. They did not make any big deal about the low cortisol. Once I got home and continued to be so sick, I looked online for low cortisol and it scared me to death. It seems to be very serious, and I am confused why they did not talk with me about it or say I needed to follow up with it. From what I read, even secondary causes like long term steroid use causing low cortisol requires replacement therapy or it could be life threatening. Is this a normal lab finding for most who take steroids like myself? Any advice or information would be really appreciated. I am very nervous. I did call my reg. Lupus doc, and will be seeing him next week, but my nerves cant wait a week!
Hugs to you all, thank you .
Mary

deleted_user 03/16/2010

First off, don't be nervous or scared to death. Information found on the internet tends to have that ominous tone.

Cortisol, as your probably know, is a stress hormone produced by our bodies in the adrenal gland located on top of the kidneys. You produce approximately 7.5mg a day so your currently dosage is basically simulating a natural state while waiting for adrenal glands to take over the workload again(which is why we taper slowly from high doses). If you're still feeling awful they may have tapered too fast but that's all dependent on what the prognosis and treatment plan is.

What were the symptoms of your flare and what were you hospitalized for?

If it helps I'm currently on 40mg of prednisone a day down from the 60mg I've been on for a few months. That number has bounced around for almost 8 years now

marycanelas 03/17/2010

thanks Ryan for your reply. I know the internet can definately be intimidating. My flare symptoms were chronic fevers, very severe fatigue, joint pain, my knee was swollen and red, overall pain in the muscles, and most importantly I also have Myasthenia Gravis, and my hallmark red flag is when my left eyelid droops, and it was almost completely closed, and my breathing tests showed my muscles were getting too tired too fast. There was quite a bit going on, and my CRP was elevated at 15, they were treating me at home with 20mg of prednisone and cellcept, but after a full week and no real improvement, I saw my doctor, and he noticed my eyelid drooping, and knew it was the MG flaring now also, so he admitted me right then saying he wanted to get me stablilized and make sure there was no infection going on due to all the fevers.
It sounds like you really know something about cortisol. Do you work in the medical profession, or are you just well educated due to your illness?

deleted_user 03/17/2010

Ryan can I ask you? you seem to know about this,[i have next to zero experience]....should we have corisol tests to see if we are producing enough,as routine check?..im new to this..i read what low and high cotisol can make you feel like...i feel alot like they describe?...ive had megg backa pain" stress and FM for 5 years now..my Adrenals must be fried i reckon?...they can do some urine test for 24 hrs i think from memory,to check can"t they??..im on 5mg of pred at the mo.. but when i come off it im back to feeling bad again?, i go back on it i do alot better...so im wondering if im not producing much natural cortisol myself?...starts ya thinking?...

deleted_user 03/17/2010

glad your out of hospital Mary..must have been awful, it never stops does i this stuff!?l...huggs sweety..

deleted_user 03/17/2010

Hi everyone!
I also am taking prednisone 10mg long term the does do go up depending on when I have flare ups. I was dx almost 2yrs ago with Sjogrens and renal tubular acidosis. I have been on immuran for a yr and it was doing nothing for me so now I have been on cellcept since June but found out today that I am going to start weening off the cellcept because that is not working either. They figure if the cellcept was working I would not have to be on the prednisone. From my lab work they found out my body is not producing cortisol so the prednisone is taking the place.
The symptoms I have are the aches and pains and my potassium drops frequently causing hospitalization...
When I was first started on the prednisone I hated it! The weight gain was my biggest concern and not sleeping. Now I have accepted being on "the puffy drug" I feel so much better and I have energy. Other than not being able to sleep much I feel great!
I just hope things stay like this and weening off the cellcept doesn't cause a flare!
Sorry for the long reply but I wanted to put my two cents in Lol
hugs to al!!!

marycanelas 03/17/2010

thank you all, its great to be able to read others experiences, it is so helpful. I am off to the rheumy this afternoon in Boston, they think I have necrosis in my right knee, due to an MRI that was done in the hospital, but the official report was not in when I was discharged. They called to tell me the "good new" and set up this appt. I think necrosis is bad, but I do not think I can take any more "bad" so I am waiting for the doctor to tell me what it means.
Happy St. Patricks Day to you all! Irish or not, enjoy the day and have some fun!! I will post what my rheumy tells me today about my cortisol, hopefully it will be helpful info.
Hugs, Mary

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