Adrenal Crisis

[LindaJoy]

Hi, everyone,

It's been awhile. I've really been struggling with my mast cell disease. I'm back in the hospital for the third time in a month, only this time, I went into adrenal crisis while coming down on prednisone. I guess, from what the doctors said, I'm lucky to be alive.

I'm wondering if anone can answer some of my questions. I'm hoping.

I've been on steroids since January. I was down to 5 mg daily when I had a major problem and was put on 80 mg, IV, to calm my system, on April 12. I was quickly brought down to 40, IV, then transferred to 40 orally. I was sent home on the schedule of 40, three days, 30 three days, 20 three days, etc. I made it to the third day of 30, when I took my 20 mg in the morning and nearly died three hours later. I just don't get why this happened.

I had taken my 20 with breakfast, finished reading a book, got sleepy and laid down to take a nap-- I usually don't nap. One hour later, three after taking the steroids, I awoke with severe abdominal pain. I thought I had to go to the bathroom, so I stumbled there, not feeling right. I don't know the order of things, but I know I developed the following symptoms at some point while sitting on the pot: extreme sweating all over (I don't usually sweat much), vision went gray, tingling, pain going into my back, tingling all over, about to pass out, then, from low to no bp, high heart rate, low pulse ox, then loss of bladder and bowel. My doctor said this is what happens before the body dies. That's nice to hear. My husband said that I was extremely sweaty, then all of a sudden, I got dry all over and turned extremely pale.

Now, I've been in the hospital for a week, doing adrenal tests, recovering, etc I've been switched from IV salumedrol to oral hydrocortisone. I feel like H$#%.

My docs said I was coming down too fast, yet I was still on 30 a day. How could I go into crisis on 30 a day? I felt great the day before!

There so far is no evidence of Addison's, other than adrenal suppression brought on by steroid use. I'm so scared I'll not be able to get off of the steroids without more life-threatening episodes. The endo who was called in decided that the way to avoid the life-thyreatening problems is to keep me on high dose steroids and forget it. Great;.

If anyone can give me some information about all this, I'd appreciate it, like personal experience, insights, etc. I've read a lot on the internet, and I can't find much more than clinical stuff

I seemed to have come out of the crisis by myself, at least coming from no bp to some bp, etc. Is that unusual?

I went from feeling fine to nearly dying within minutes. How much time does one usually have to get help when this happens? I didn't feel like I had any time once the crisis started.

My endo is not giving me a prescription for syringe steroids in case this happens again. I think I should have it. Any thoughts?

Well, I'm gonna get to sleep, so. Thanks for any responses, in advance. I may not be able to get back with all of you for ahwile, so I'll say now, thanks for your replies. Know all you say will be apreciated.

Lindajoy

[ramakentesh]

A few observations that may be of assistance:

Anaphylaxis can present as an adrenal ciris like the one you described. this may be relevance if you suffer from MCAD or related disorders.

POTS can induce random andrenal surges that may not be related to your steroid use or were perhaps triggered by it but this is just speculation.

[futurehope]

I read a little bit about adrenals. It is possible that the hormone secreted by your pituitary gland (ACTH) did not secrete enough, and therefore, your adrenals were not stimulated to secrete enough. IOW, your adrenals may be responding properly, but the hormone that simulates them was insufficient. I don't know.

Adrenal crises is nothing to fool around with. I strongly suggest going on a forum that deals with endocrine, and specifically adrenal issues. See : http://hormonesupportgroup.proboards.com/i...?board=adrenals

Obviously, your body could not handle coming off of the medication even though it was titrated down.

I hope you feel better soon.

[firewatcher]

I am betting that titration down was for a "normal" person. Since we over-respond with our systems, the titration was probably too drastic. Work very closely with your endo and allergist, it could have been either or both! Good luck, I hope that never happens again!

[mkoven]

I had a terrible time tapering off three weeksof 60mgs/day of prednisone in 2006. It was esp bad when I got below 30mgs. As I got lower, I had to taper more slowly. I remember one episode vaguely reminiscent of what you are describing, though not as extreme. I did have repeated episodes of getting really shaky, lightheaded, and just feeling like I had suddenly and dramatically run out of all gas. I'm trying to remember, but I think I was eventually given prednisone in 5mg and 1mg tablets so I could taper more slowly. The last 10mgs were the hardest and took me several weeks. My response to steroids--both taking them and stopping them is exaggerated. I'm sure my ans issues have a role here.

[Tessa]

Hi LindaJoy

Sorry about your adrenal crisis, but happy to know that you could recover.

I am taking HC and fludrocortisone and used to be on the board that you have been told to visit (but it has been frozen)

I agree with your docs that you were coming down too fast. I have been recommended to tapper down 5 mg every 5 days.

Do not be afraid of more life-threatening episodes. When your doctors tell you to come down, do it but very slowly.

Now, I've been in the hospital for a week, doing adrenal tests, recovering, etc I've been switched from IV salumedrol to oral hydrocortisone. I feel like H$#%.

What about the results of the adrenal tests? And what and how did they tested?

I went from feeling fine to nearly dying within minutes. How much time does one usually have to get help when this happens? I didn't feel like I had any time once the crisis started.

It can happen. Sometimes without a warning.

My endo is not giving me a prescription for syringe steroids in case this happens again. I think I should have it. Any thoughts?

I agree with you that you should have an emergency kit.

Well, I'm gonna get to sleep, so. Thanks for any responses, in advance. I may not be able to get back with all of you for ahwile, so I'll say now, thanks for your replies. Know all you say will be apreciated.

Have a good and deserved rest, Lindajoy. You have gone through a difficult episode.

Please, keep us updated and pm me if you like.

I am not an expert (I have been on treatment for about 1 year and a half) but I am glad to share my own experience with you.

Take care,

Love,

Tessa

P.S.: By the way, I forgot to ask you. Why did they put you on steroids initially?

[juliegee]

A few observations that may be of assistance:

Anaphylaxis can present as an adrenal ciris like the one you described. this may be relevance if you suffer from MCAD or related disorders.

POTS can induce random andrenal surges that may not be related to your steroid use or were perhaps triggered by it but this is just speculation.

DITTO RE. THE ANAPHYLAXIS!!! Your epsiode sounds like a few I've had that reverse with an epi-pen. Your docs can run tests to determine if you truly have Addison's. If those tests come out normal....you need to further look into the possibility that you experienced anaphylaxis. Let us know what you find out. I'm keeping you in my prayers

Julie

[juliegee]

I am betting that titration down was for a "normal" person. Since we over-respond with our systems, the titration was probably too drastic. Work very closely with your endo and allergist, it could have been either or both! Good luck, I hope that never happens again!

Another excellent point!!! You have several chronic health issues. What works for "normal" people, may not work for you.

Hugs-

Julie

[dsdmom]

That sounds terrible! I am so sorry you had to go through that. i don't blame you for wanting the syringes just in case...I would too!

I don't know how much 'scientific' data I can offer but I can offer personal experience. Because we don't know why I'm having such a ridiculously hard time coming off prednisone and previously my acth tests were all normal...meaning my adrenals aren't completely awful.

Anyway I was on a super short taper - like 1 week - started at 60, then 40, 30, 20, etc... well once I got to 20 when I tried to drop lower my body completely freaked out. I did not have your almost dying experience but I felt pretty awful. Turns out I can't even drop by 1 mg - I get too sick. We have to go by .5 mg and it's still ahrd for me. For some reason - and again, we don't have a handle on what is going on - but my doc thinks my adrenals are definitely not up to par - I just can't do it. Right now I'm on 17.5mg and it's taken me 9 months to get here from 20mg. Sounds ridiculous and it is but there's not much I can do about it...

So I dont' ahve anything to offer except sympathy - let me know how it goes.

[LindaJoy]

Thanks, everyone. I've been diagnosed with Addison's Disease. I flunked my ACTH test thoroughly. My adrenals aren't working. Too much steroid, plus a bit of adrenal insufficiency all on my own.

I'm still in the hospital, trying to adjust my meds so I quit crashing.

Take care, everyone, and thanks again.

Linda

[juliegee]

Thanks, everyone. I've been diagnosed with Addison's Disease. I flunked my ACTH test thoroughly. My adrenals aren't working. Too much steroid, plus a bit of adrenal insufficiency all on my own.

I'm still in the hospital, trying to adjust my meds so I quit crashing.

Take care, everyone, and thanks again.

Linda

What a blessing to have this figured out! I suspect you've had a lot of overlap between the Addison's and MCAD. Sorting the two out will be invaluable.I've been worked up for Addison's countless times and my ACTH was always normal. MCAD and Addisons have many overlapping symptoms. With daily treatment, I pray you'll start to feel stronger every day. Keep us posted, Linda Joy.

Big Hugs-

Julie

[dsdmom]

Well I'm glad you have an answer! I guess I'm confused though - I thought they couldn't do the ACTH test while you were on prednisone because the results would be skewed. Is that not true?

[LindaJoy]

I have what I think they call secondary Addison's, brought on by steroids. I guess they can do the test while on steroids. Older labs from years ago, when I was just getting really sick, show adrenal problems, as well, without steroids, so I have the issue, just made worse by steroids. I think this is how this is all going. I'm very new to this diagnosis (just found out last night). I'm not handling the diagnosis well. It's been a long four years and it just keeps getting worse.

Thanks you all again, for your support. I appreciate that you are here.

Hugs,

lindajoy

[Tessa]

Hi Linda

Sorry to know that you are still in hospital, but at least you have an answer, and I can tell you that it is not easy to get to the dx.

If you already had adrenal issues long ago (without treatment?), I can fully understand you having health issues.

Steroids in excess can cause problems, as well as taking less than needed... You will have to get to the right treatment for your needs, but you WILL get to it. You will see. And your health will improve too.

Keep the faith and remember... You are not alone.

love,

Tessa