Full body megaflare and tapered to 5mg

Friday night the megaflare hit.  In truth, I expected to spend far more time in a full body megaflare during this taper.  I’m at 5mg, and still have about four upright hours most days.  I feel like something the cat hacked up on the carpet, but pain levels have been mostly manageable with oxycodone.  Some days I go over my standard dose, but some days I stay under.  I’m not making it to gym much, or doing much of anything, really, but overall, I’m doing better than expected.

But Friday took me out.  Severe pain in almost every joint, even ribs and jaw.  Truly disabling pain. The kind of pain you can only lie still and breathe through, and wait for it to go away.  Hope that it will go away.

Yesterday was day 2, and I mostly slept the day away.  Along with the arthritis pain, the headache, nausea and flank pain were also severe.  The day went by in a blur, I couldn’t focus, felt confused and developed a fever.

These are the things that usually happen when I am too low on prednisone.   They don’t feel like rheumatoid arthritis symptoms returning, they feel like something else.

They feel like adrenal insufficiency, which I was diagnosed with one of the times I had surgery, I think my first shoulder surgery. I needed a rescue dose of steroids, because the stress of the surgery put my body into adrenal crisis.  When you’re in hospital, and the doctors know what’s going on, that’s a pretty easy fix.  Add more IV corticosteroids, and recovery is quick.

Out in the real world, it’s a little harder to spot.  They symptoms of adrenal crisis are vague and easily missed.  A true adrenal crisis can be very serious and even life threatening.

And that’s the risk when tapering down on prednisone.  When a person has been on prednisone for many months, or even years, the body stops making its own cortisol.  Cortisol is called ‘the stress hormone’ and it regulates many of the body’s functions, including blood pressure, glucose levels and fat, protein and carbohydrate metabolism.

When your adrenals have been suppressed and you don’t make enough cortisol, it’s called secondary adrenal insufficiency and the symptoms include fatigue, muscle aches, weight loss, dizziness, dehydration and low grade fevers.

Prednisone replaces cortisol and acts the same way in the body and usually the dose is tapered very slowly to allow their adrenal glands to ‘wake up’ and start producing cortisol again.  If your body isn’t producing any cortisol at all, the replacement dose of prednisone is 7.5mg.  When you taper below 7.5mg, your adrenals need to start producing cortisol for the body to function properly.

I’m currently at 5mg, and there’s no way to tell if my adrenals are working, if I’m making any cortisol right now.  I have all the symptoms of secondary adrenal insufficiency, and I’m feeling pretty craptastic every day.  I’m stopping the taper here until I talk to my rheumatologist and my immunologist.  I don’t feel safe to go any lower.

The risk isn’t the day to day stuff.  I could keep tapering and potentially be fine for weeks, apart from the pain and the whole spending 20 hours a day sleeping or lying down thing. That’s not exactly living…

The risk is what happens when I’m hit with a stressful event.  If I were in an accident, or big emotional stressor, or just pushed too hard.  When you’re under stress, the body produces extra cortisol to cope with that stress.  But if your body can’t produce cortisol, you collapse and go into adrenal crisis.  And adrenal crisis is a medical emergency, and requires hospital treatment.   But to get that help, someone has to recognise the symptoms of adrenal crisis. It’s not a common occurrence and its easily missed, which is why everyone who has been on prednisone long term should wear a medical alert bracelet.

I have been invited to a conference next weekend, and I really am not well enough to go.  It will be stressful, physically, mentally and emotionally.  The travel will involve cabs, planes, more cabs, and two very late nights (anything past 9:00pm is a late night for me).

It will be exhausting, but I want to go. When I accepted the invite, I didn’t know I’d be tapering prednisone, and getting to the bitey end of that process.

So I’m going to go. The Chicklet is coming too, she’ll be acting as my carer.  It sounds strange that my almost 15 year old daughter will be my carer, but I am going to need help. To keep me focused, to help me get from place to place, to be there in case I do crash.  Very unlikely, but still possible.  I wouldn’t go on my own, just in case.  With the Chicklet there, I will be fine.

It’s still hard to accept that I really do need a carer these days.  Truth is I’ve needed a carer for a long time…I just don’t have one.  There are many levels of disease and disability.  I never thought I’d get this far down, but I’m still telling myself its temporary. That my Immunologist’s theory might pan out. That there may be treatment that gives me a life that doesn’t involve constant pain and sleeping my life away.

I’m not sure I’m going to get lower on prednisone without another medication.  5mg is considered a ‘safe’ long term dose. I can stay here for a long time.  Last appointment, my immunologist said that if things get too tough, that if the taper left me completely ‘non-functional’ (I wonder how she defines that?), she would start me on Imuran.

I’m close to taking that option now.

And I’m being very careful.  Taking everything slow and steady.  Doing the bare essentials, sometimes not even.  I’m babying this body along, dealing with the pain and accepting that it’s not going to get any better for quite a while.  The full body megaflare has passed, the knives have become aches.  Sleep is key.

I did manage to get out today.  The Chicklet took me shopping and in 30 minutes, one store and for well under $100 I have everything I need for this weekend away.  A cocktail dress, a neat and casual outfit and comfy shoes.  I hate shopping, when I do it, it’s a surgical strike.  The Chicklet got a dress and a cool pair of boots.  We were back home inside of 1.5 hours.

But that means I can’t do dinner tonight…way too tired now.  So my ex-husband is going to have to bring food, if he wants to be fed.  I’ve txted him. Chinese food it is.  Not strictly allergy friendly, but right now EoE has to take a backseat.

This week I only have one appointment. My rheumatologist.  I’m going to ask her for a script for Imuran so that its on hand when I need it, and a short synacthen test, as suggested by my immunologist, to see if my adrenals are working at all.  I always feel better when I have a plan.

And now it’s time for more pain meds and a glass of red.