For Jenni

Jenni left the following comment:

"Hi. I stumbled on your blog posts while Googling for info on HPA axis suppression due to long-term steroids...

I've been on prednisone for for about 18 years now, for severe RA. At some points I was taking 20mg a day, but the past few years I've hovered at 10 - 12mg per day. Prednisone has absolutely ruined my life: DEXA scans equivalent to an 80 yr old woman, three major joint replacements, fused wrists, cracked and broken teeth, not to mention the emotional aspects of having the face of a 500 lb circus freak.

I'm 30 now, and I have not had much luck with physicians as an adult -- a series of rheumatolgists either wanted me to taper at an insanely slow rate, or they informed me how bad prednisone is for my body and ordered me to immediately drop to 5mg, not giving a shit that at that dose I basically couldn't walk or dress myself. I gave up on docs (except pain management) and have been freewheeling for a few years.

At this point, nearly all my pain and mobility issues are caused by the damage done to my muscoskeletal system by pred; there's very little active inflammation -- so I decided that I need to get OFF this stuff once and for all. I don't want to die at 50, inhabiting the body of a debilitated 90 yr old.

I tapered by 1mg a week. On July 1st, for the first time since I was 12, I stopped taking it entirely.

I was Googling because I'm worried about going into adrenal crisis without knowing it. Tapering has been easier than I'd feared, but I already had almost all the symptoms before I began tapering. My knees are so bad I can't walk much anymore - I know I need replacement surgery or I'll be in a wheelchair by Halloween. I spend most of my time in bed or on the couch, and sleep a lot. I've never been a big eater and as my pain level and depression\frustration increase I eat even less. (I also have some serious dental issues due to the pred eroding half my teeth, which makes eating painful to begin with).

So, conclusion? I'm already experiencing extreme joint pain in knees and elbows, I sleep 14 - 16 hours a day and lay around the rest of the time, I barely eat enough to sustain a bird. That was all true before I began tapering the pred. How the hell would I know if I were in adrenal crisis? I'm adamant about never ingesting the foul stuff ever again UNLESS it's a life or death emergency. I just don't know how to tell if it is.

After 18 years of HPA axis suppression, I don't know how my body could be able to just start pumping out its own cortisol again. Isn't there a point where the atrophy is too much to recover from?

I took 1mg of prednisone last night because I couldn't sleep and was feeling light-headed and nauseated -- not unusual, as I'm on narcotic painkillers, nausea is something I live with. Feeling dizzy is also a familiar state of being, particularly when all I'd eaten in the past 24 hours was one slice of Kraft cheese and a couple Pixie sticks.

I'm just afraid I won't recognize adrenal crisis until it's too late because the symptoms are all so commonplace for me. I've been fighting the horror of prednisone for so many years there's a part of me that can't believe I could actually be free of it.

I'm not asking for medical advice. I have a rheum appointment on the 4th. Maybe I'm wondering if you could fill me in about HPA axis suppression and recovery, and adrenal crisis. Pred has a half-life of about 24 hours, I know. I was taking 2mg for about a week, then 1mg for a few days, then I stopped taking it entirely for five full days. If my body isn't producing enough cortisol, wouldn't I be dead by now? Is there any way to measure cortisol level at home? Based on your experience, what would you do in my place?

I hope I haven't imposed myself -- I've never met anyone who's fought prednisone the way I have, and I think a lot of frustration just sort of came pouring out, lol."

Okay. There were a lot of questions in there, here goes.

1. Your situation is different from mine in material ways, so much so that I don't know how much help I can be. Have you tried networking in the RA community? You can also talk to adrenal patients, but their situation is different enough that it will be difficult for them to know what to tell you. They can however, point you toward studies and information as well as share their experiences.

The two adrenal boards I suggest are here and here.

2.Slow tapers are safe tapers. Fast tapers can be dangerous, which is why I keep ending up in trouble. So I would not take that as a black mark against the rheums you've seen, they're trying to keep you from ending up like me.

3.The rheums that cut you to 5mg with no taper? RUN screaming. The 1mg a week taper you did may have been okay, or you may find that it was too fast. The thing is, I wonder if your ability to 'feel' symptoms is stymied by a) a high tolerance due to chronic illness or b) masked by medications (you say you're still going for pain mgmt). I know my sense of normal is all messed up, so I worry you might be in the hole and not realize it until it's too late.

4. " If my body isn't producing enough cortisol, wouldn't I be dead by now?" Not necessarily. I had an am cortisol of 1 and still drove a car and went to work. I wasn't terribly productive at work and I sometimes drove with my eyes closed, but I kept going through the motions of life. I slept 15 hours a day and never felt great, but I functioned. Of course, I was also in my 20s, which, youth helps.

Now at almost 40, I think an am cortisol of 1 would have me on the floor waiting for someone to find me and call 911. The am cortisol of 6 I had this episode, I felt it. A lot. So it varies, but you may not necessarily be down for the count.

5. " Based on your experience, what would you do in my place?" I would get an am cortisol draw, even if I had to go to an independent lab and pay out-of-pocket to do so. Better safe than sorry. A crisis hits very fast. Because your baseline is already so like a crisis, you may have trouble catching it early. Getting actual blood work so you have an objective measure is critical.

After the blood draw (which should be done asap), I would start some alternate day dosing. Maybe 5mg every other day, but you should experiment with the dose. For the HPA axis to come back (and it may not, you are right to be concerned), you should pursue a switch to Hydrocortisone, which has a shorter half life.

Make sure your family knows what to do and what to tell medical personnel if they find your unconscious (i.e. adrenal insufficiency/long term steroid use, needs 100g of prednisone in an emergency). You should get a Medic ID bracelet if you don't have one.

I would get a rheum I could live with and try to foster a long term relationship. Same goes for PCP, a good PCP would probably be invaluable as your body starts to manifest all the various complications involved with RA and its treatment. But maybe RA patients would have better advice on that front.

Also an endocrinologist to run the testing to determine whether your HPA axis is recovering or not.

You should not be doing this alone. I know how frustrating is to go to the doctor and go to the doctor, especially when they aren't connecting with you and your needs, but you really do need a doctor in your corner.

Unfortunately, you're at the point where not seeking medical care is just as bad as crappy doctors, if not worse. Find the right doctor for you. It may mean an appointment a week or whatever, but if you can find the right fit, it will be worth the effort. Other RA patients may be able to pass on recommendations to cut the search short.

Good luck. I hope that helps.

Work Out Report

So I'm back to trying to kill myself with exercise. It's genetic. One of the parental units does insane things like run 10 miles with pneumonia (while calling me to tell me about it). I'm not that crazy, as evidenced by a distinct lack of exercise induced injuries compared to my parent who is a hot mess of injury, but I can push myself into a pool and muck up my knee pretty good.

(I did not jump, I sat on the edge and entered that way, somehow slamming my knee to the bottom of the pool. Now I walk funny and can't go to Zumba class.)

This (sufficiently anonymous) picture is from when we were doing the Strength Cardio work outs (aka Lactic Acid training, aka Metabolic Conditioning). I wonder where I would be today if a)I could've kept up with those work outs and b) been able to lose weight?

Here's a front view. I almost want to say how much I weigh as I think I look pretty good given the ginormous number on the scale, but I can't bring myself to be that honest. Let's just leave it at, I'm dense and weigh more than anyone expects.

By the way, a good quarter of my ass was muscle growth from those work outs. NOT what I was going for as I have enough junk in the trunk, thank you, but, if anyone has a flat butt, this work out method will fix that right quick.

My hope is to start working my way up to those workouts again. Now that the steroids are done, I seem to be able to lose weight, although I did get side tracked by birthday cake for a while there. It would also be nice to feel strong and competent in my own skin as I've spent quite a lot of time not feeling like that.

My next goal is to drop 20lbs. If my health cooperates, I should be able to do that this summer.

The only thing missing? Push up motivation. I just don't want to do them. No interest whatsoever. Don't know what that's about. If you see the push-up fairy, send her my way.

PS. As of today, I'm not longer radioactive. Sadly, the police never stopped me to inquire as to why I was tripping their geiger counters, so I never got to whip out the little card I got from the HIDA scan explaining I was not a nuclear device.

HIDA Scan Results

Ejection Fraction: 62%

The fact it took 2 hours for the contrast to enter my bowel? A non specific finding that occurs in approximately 20% of patients and merits further investigation with a Right Upper Quadrant ultrasound to rule out a bowel obstruction.

H. Pylori Test: Negative.

Liver Blood Work: Normal (which I am SO relieved to hear as the fatty liver thing worries me).


Number of phone calls it took to learn this? 6 back and forth over 3 business days.

Amount of time on hold with the doctor's office for the last call? Long enough to complete a work out.

So why does it hurt so much? I can live with pain, up to a point. The past month or so started to cross the line for me, especially with the GERD flaming high. It's hard to believe that level of pain is completely benign.

I also would be shocked if there's a bowel obstruction, everything seems to be moving along just fine in there.

Next steps will be the ultrasound, which will show nothing. Then the GI appointment and, if necessary, the PCP has offered a surgical consult to see about having the gallbladder yanked anyway.

On the one hand, I am relieved that there is no need to rush to surgery, especially with the HPA axis being so mercurial. On the other, I'm frustrated by this body that hurts for no good reason. Even less fun, I believe the test results put me in a category where even if I have the gallbladder removed it may not alleviate the pain.

Sigh.

At least now when I'm up at night due to the pain, I can do so with confidence that there is nothing wrong.

Playing Dr. Google or How People Find this Blog

• "prednisolone withdrawl and hot back and kidney"

You're f*cked. Welcome to my world. Go to the doctor now, but keep your expectations low, they won't know what to do with you.

• "how to avoid corticosteroid crash"

Don't take steroids. Too late? Read here.

Cliff Notes version: Don't stop taking steroids. Increase dose as necessary. Drink lots of water, eat salt and some sugar. Find a doctor who remembers reading the adrenal section of their medical textbook.

• "adrenal insufficiency will it fix itself if it is from prednisone treatment"

No it won't fix itself. Drink lots of water, eat salt and some sugar. Find a doctor who remembers reading the adrenal section of their medical textbook.

• "steroid withdrawal pain" and it's cousin "steroid withdrawal and muscle pain"

Hurts like a mofo. But you know that already. Hang on, it will pass. No, the doctors don't care so don't even bother calling them. Take over-the-counter stuff, if you can, to cut the pain--that'll take it down from a 6/7 to a 4. Also, stop exercising until the pain is gone.

• "adrenal insufficiency & pain all over the body from steriods"

Yep. It happens. See above. Been there, still doing it, myself. No, doctors have no idea how painful it is.

• "steroid withdrawal when will it end"

It usually takes roughly a week for steroid withdrawal to pass, give or take. You should feel progressively better as time passes, if not then you should be evaluated for potential HPA axis suppression.

• "can't find gallbladder in HIDA scan"

Not an expert, but, from what I've read, this generally results in your gallbladder being given an eviction notice. Call your doctor and get the official results.

• "can 2 months on prednisone cause addrenal suppression?"

YES. Please see a doctor to be evaluated asap.

• "steroid withdrawal doctor"

Good luck with that. If you find one, send me their name.

• "Roller Coaster and Tilt Table Test"

Doctors only order that one for the bad patients. What did you do?

Fire on the Fourth

Let's take a moment to review our multiple brushes with fire.

Last July we discovered a serious electrical problem that could've burned the whole house down. Instead the breaker tripped repeatedly, protecting us, but also ruining a fridge full of food. It took us a month of frustration before we figured out where the exposed wire was.

This Spring, I managed to set a hand towel on fire and saw, first hand, the gaps in how smoke detectors work vs. how smoke really travels. Even with smoke detectors it would be really easy to die in a fire. In fact, smoke detectors only cut the death rate in half. You still have a 50/50 shot of dying in a fire. Did you know that?

In June, this year, my husband entered the Darwin Awards competition by placing Tupperware in the oven and not telling me. I pre-heated it to 400F, completely unaware of the hazard until I went to put the chicken in the oven. Thankfully, I was right there and ready to use the oven, not off doing something, i.e. dawdling not really worrying about when I was going to use the oven (which would have resulted in melted, smoking plastic).

Then our basement started to smell like something was on fire. We never found a source, but the smell was strong enough I was touching the walls looking for hot spots. We unplugged some lamps and electronics and I go down and sniff on a regular schedule, still trying to uncover the source of the problem.

Last night, a smoke detector went off. We thought the beep-beep was a weather advisory, but nothing ever came on screen. The beeping intensified and we realized it wasn't from the television. So we turned everything off and listened. A full 10 minutes after the beeping started, we finally clued into the fact it was a smoke detector going off. Except we couldn't tell which one was beeping.

Hubby went to check the basement, while I stood, poised at the foot of the stairs, ready to dash up and grab the toddler. Even then, I couldn't immediately tell it was the smoke detector upstairs that was going off.

Once I realized it was, 'heart in my throat' does not even begin to describe the terror I felt as I ran to her room. All that time wasted as we remained clueless and then the inability to tell which alarm was going off, both factors meant certain disaster in a fire.

Thankfully, there was no fire. Just another valuable lesson in fire safety.

Please check your smoke detectors. Be sure you can hear them if they go off-- especially in the summer when everyone has fans and a/c generating lots of background noise.

The belief that we can slap a few of those suckers up on a wall and we're protected is false. The truth is, if there were a fire in our basement, by the time smoke reached upper story detectors, the odds would not be good for us, even if we use a fire ladder to climb out* . This is the reality of fire safety as it is practiced by the general public.

And you better believe I am about to get all kinds of anal about it at our house. Too many close calls.

*First we'd have to wake up the toddler, which is nigh impossible, the alarm last night didn't even come close to waking her. Then we'd have to get her down a ladder, which, with her motor issues, not a recipe for success.

5mg

Haven't heard back yet on the HIDA scan. Doc didn't call me on Friday. I may have missed a call from them Sat morning per the 'Restricted' flashing under missed calls on my cell phone, and no call backs, so I'm SOL until next week, after the holiday.

The 5 mg helped. Slowly. I suspect it was so slow because a)I maybe needed more than 5mg and b)I should've gone to bed for the day (yes, it was that bad) and instead I kept going.

Sitting outside in 90F heat is not really going to help you when your adrenal system has gone haywire. I supervised the toddler at the pool for 2 hours, laying on the concrete during each 15 minute swim break, scrabbling for every little bit of rest I could find.

Then we went swimming again later that day. Basically, I just plowed forward (well, not so much plowed as lurched unevenly). Went to bed early. Slept in a wee bit today. Got up and felt like I was trying to move through Jello, but decided to forgo any more steroids.

Sat morning was rough, but I caught the low blood sugar early, fed it a Godiva truffle (at the mall), and spent the day shopping with my parental unit. It was mildly embarrassing to insist that we stop to eat at 2pm as all I'd had was a flax/almond muffin and that truffle and the blood sugar was NOT happy about it.

Everyone else that has a body that works, they just go without worry of interference. I have to cater to the stupid things my physiology does and it can be awkward because no one understands. I had to get kind of forceful about "I need to eat. I'm going to be sick if I don't eat" and people looked at me weird when I said it. I wanted to melt into the floor.

The good news? I was hungry today. Really hungry. The Jello fog lifted by noon and I felt pretty okay. Like it was a good decision to not take steroids again.

With a Little Help from My Pills

Took 5mg steroids today because...

-exhausted
-weak
-no appetite for the last several days (ate only one meal yesterday and am forcing myself to eat)
-loopy
-BP trending low but not bottoming out per se, just feels like it is
-irritable
-muscle cramps
-HIDA scan was way stressful

Other possible solutions to explore include...

-Tinkering with BP med dose or discontinuing altogether
-Putting more carbs in low carb
-Staying far, far away from medical procedures of any kind
-Never seeing doctors again because they order said medical procedures
-Stop complaining about anything because that means I see doctors who order said medical procedures

Still can't say yet if the 5mg helped but I'm waiting for it to kick in aaaaany second now.

I also hit my head harder than anyone should this morning, which is known as NOT HELPING. We have a small house and the concession we made to have a dining room, (teeny) family room and (tiny) play room on the first floor was that we shoved our bed in the dormer nook upstairs, which has a vicious widow's peak.

Yes, we sleep in a hallway that occasionally attacks our skulls.

Note to self: Never jump out of bed.

The HIDA scan results are in. Just waiting for the doc to review them and call me back. Still time to place your bets. Yay or nay on gallbladder removal? Since I seem to specialize in symptoms that don't test well, I say nay. Also, I have learned that GERD meds totally jack up the gallbladder.

Now, if you'll excuse me, I'm going to self medicate with chocolate and then take something for my aching head.