The truth about living with Rheumatoid Arthritis

adrenal insufficiency

GP pain management appointment

I saw my GP this morning about my pain medications and dosages. I booked a long appointment so we could discuss everything.  He started off very hard line,  but quickly softened.  I looked like poo.  I had about two hours sleep last night. Tired. Very foggy.  And we could both hear all my joints crack whenever I moved anything.  I’m convinced he’s under pressure to lower my doses, and it’s not coming from him.  He was very understanding, in fact.

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They warned me about this…rheumatoid arthritis prednisone and adrenal insufficiency

I saw my GP yesterday.

Because I needed to talk to someone.  Someone medical. Someone intelligent. Someone kind.

That’s my GP.

I explained what happened last week.  Trip to coast.  Body unable to cope.  Managed to get myself home, but my body didn’t recover.  Couldn’t recover.

I described the incredible fatigue. That I could NOT get out of bed or off the couch.  That my brain slowed down. That I couldn’t think. That I was so confused. I didn’t know what day it was, what I was doing, what was going on, most of the time.  I told him about the headache.  The abdominal pain.  The depression.  The nausea.  The lack of appetite. Forcing myself to eat, only to throw up afterwards.

His response was ‘I think you were experiencing adrenal insufficiency.  Maybe even crisis.  Did you up your prednisone?’

I told him I did…eventually.  And within 24 hours I was a functioning human again.  And that throughout all this time, pain wasn’t a big component.

When your life revolves around pain, when it is NOT a big factor, that’s worth noting in itself.

He asked me how low I had gotten with my prednisone dose.

I told him 10mg.

I saw his face.  He said IF it was an adrenal issue,  that would mean that my adrenals really aren’t working at all.

I asked him ‘Do we test my cortisol?’

He laughed and said nope.  We can’t test it while I’m on prednisone. The test result would be inaccurate…worthless.  So we’d have to take me off prednisone.  Risk killing me. Do the test.  To find out that….we need to put me back on prednisone!

We laughed.

We have a laugh we share. Though it’s generally black humour these days.

He knows me quite well now.  I have been seeing him for six years.  He’s seen me go from the very fit, shocked-but-optimistic-and-determinedly-going-to-kick-this-thing’s-arse to the calm, but sad and largely defeated patient he saw yesterday.

He has watched the hope fade.  He has given me a hug each time I fail another treatment.  He helped me fight to get onto biologicals.  He has helped me through the side effects.  He has given me moral support and always made time for me when the side effects were depression and anxiety, but I HAD to keep taking it.  He kept reminding me of the goal, held my hand (figuratively) and reminded me if I don’t complete the requirements I forego any more treatments.  Because of the bureaucratic bullshit rules that decide who can have treatment and who can’t.

And he’s the guy that sewed up my wrist after I slashed it down to the tendon in  a suicidal fit of medication induced psychosis.  He told me he didn’t think I was ever coming back from there.  But I did.

He has a great sense of humour. I did too, once upon a time.  It’s less prominent lately.

So to say that I trust him completely is understating things a tad.  To say that I need, him even more so.  To say that he’s the most important man in my life is true, but also really, really sad.  (No I’m not in love with him. Relax people. He’s not ‘that guy’.)

So his opinion is that I am prednisone dependent because my adrenals don’t work anymore.  This is a risk of prednisone use, but it’s glossed over on a regular basis.

So I asked him what to do. Because prednisone is causing me a lot of problematic side effects.  I told him I dropped to 25mg to get past the insomnia and resting heart rate of 105 bpm.  And went into straight into instant mega flare.

He said stay at 30mg. Just give my body a break for a while.  Just sit tight.  Stabilise.  My body and my emotions.  The pain, on top of everything else…the sheer injustice of the amount of pain I am experiencing on a relatively high dose of prednisone, he could see,  that all of this is finishing me off emotionally.  And I only write about arthritis here. There are other things going on in my life. Just as I’m sure there are in yours.

The insult to injury is that the stupid drug doesn’t even stop megaflares. But now I’m completely dependent upon it.  And its destroying my body.

So he said stay steady.  Hold.  Wait. Let my body stabilise.  I forgot to mention my eyes completely.  I forgot to mention that my menstrual cycle has been completely out of whack. I forgot to mention that my moods are not so much a roller coaster as fire cracker hurled to the bottom of the ocean.  Next time.  I’ll tell him next time. I’m there every other week…

So I hold.  Nights are hard.  Predsomnia.  And pain.

But my days… the pain is mild.  I can even run on a treadmill.  Well, light jog. I need that.  It’s what I do. It’s how I cope.  Its how I relieve stress. I sweat. I run. (Yes it still hurts)

Then we looked at my latest blood work.  Cholesterol very high.  Blood pressure 190/114.  Blood sugar in the diabetic range, despite being on metformin.

Why?

Because prednisone.

My doc said he can treat give me a statin to lower my cholesterol. He can try me on a beta blocker to lower my blood pressure. But I am on so many other meds, and have so many medical issues, he’s really loathe to do it.  But he will prescribe those drugs, if I want them.  The risk/benefit equation is getting hazier and hazier.

I don’t want the drugs.  I think he’s right.  More drugs, more side effects.  More drug interactions. More risk.

My heart is working very hard right now.  (I’m not even going to try make some tacky allusion to dying of a broken heart.  Cheap laughs.)

Prednisone is slowly killing me.

Prednisone is saving my life.

It’s not a ‘fight to the death’.  Life is a fight to the death.

It’s a matter of whether in the medium term (because there is no long term) whether prednisone is extending my life or shortening it very radically.

No one knows.  And it’s too late to change the decisions I made that have put me here.  Fact is, I thought prednisone would improve my life, give me a life in fact, and yes, take a few years off the end.

I looked at the odds. Risks vs benefits.  And I took a chance.

And as usual, I lost.