Welcome to Day One of Actemra…it’s a miracle


OMG…its 6:30am. Usually the very worst part of the day. I stumble on razor blades to the kitchen, every joint on fire, and get my pain meds.  And then I wait for an hour for them to work before I can move anything without horrible pain.  I sit on the couch, very still, as the kids move around me and get ready for school.  I struggle to wake up, my body feels like lead and fatigue is overwhelming.

Not today.  My back is severe pain, there’s sciatic pain as well…but nowhere else.  My right shoulder has a knife stuck in it too, but it’s just one shoulder.  Everywhere else I just have aches…no knives.  Apart from my spine and shoulder, my pain levels are at 5s.  The kind of pain that you CAN be distracted from.  First thing in the morning I feel like I usually feel at the very best part of the day, after pain meds, stretches, and exercises.

I can walk freely, upright, not walking on broken glass.  I can grip the milk with my right hand, and lift the full 2 litre bottle with ease.  I can open the lid unassisted.  My body does not feel like it’s made of lead, and I am not fighting to keep my eyes open.  I can move!  My hands and feet ache.  But it’s a 5.  I haven’t woken up to a ‘5’ in years!!!  At least 6 years!  Usually my hips, knees, feet, each toe, shoulders, elbows, wrists, fingers, neck, and lower back are all 8s in the morning, ripping, tearing, twisting, stabbing, burning, aching. I struggle to sit up and get up off the bed. I hobble to the kitchen for meds. I lean on everything, I sit on a stool when I get to the kitchen.  There are often involuntary tears as I struggle to get inflamed joints moving.

Today I woke up and didn’t feel severe pain everywhere.  I just rolled over, swung my legs around and stood up. It didn’t take me five minutes to get out of bed. And I didn’t stand up and feel pain shoot from my feet up through every joint.  I just walked to the kitchen and made myself coffee.  Coffee. Not pain meds first. Coffee.

My back is still an ‘8’, my shoulder is a ‘7’.  But everything else is just aching.  Hands and feet are the worst, but relatively?  Compared to usual? Not a big deal. I can make a fist, haven’t been able to do that in a long, long time.  For me, it’s nothing short of a miracle.

I am not in agony this morning.  Unlike every other morning. I am not the tin man, I am not fighting tears and a body made of molten lead.  I’m not wishing I could lie back down, fighting to stay awake, forcing myself to be upright and moving.

I considered not even taking any Targin, but I took a 10mg instead of a 20mg.  I’ll take my 10mg of Oxynorm, but only for my lower back.  The only pain severe enough for opioids is my spinal pain.

And side effects?  I have a headache. Lately I’ve had a headache every morning anyway. It’s a worse headache than usual this morning. But FFS, a headache.  Orencia gave me a headache but it didn’t make my joints feel like this.  Not worth complaining about.

This is amazing.  Absolutely amazing. The morning is always the worst for me, until it all starts breaking down again in the late afternoon. Taking Bella out for a morning potty trip is agony. Not today.  I can climb the stairs in the back yard.  I usually struggle with those at the best part of the best day.  In the last year I’ve rarely gone up there.  No probs this morning.

I’ll stop raving now.  I’m crying, happy tears.  My overall pain level is a ‘5’.  I can’t believe it.  Please, please, please make this my new normal.


OK, now its 5pm.  I’ve had a fair bit of nausea, but that isn’t altogether unusual for me.  I have a headache that I’m pretty confident I can attribute to Actemra, but its not enough to stop me from doing things.  It’s annoying…hardly crippling. Nothing compared to RA pain.  My stomach is a bit upset, but again, is that Actemra or just one of those days? We’ll see as the weeks go on.

I have had more energy today than I’ve had in more years than I care to remember.  I’ve gotten down on hands and  knees and even commando crawled under the Chicklet’s bed to clean under there. Impossible previously.  Just can’t move like that.  I vacuumed her room and the living room.  I needed to rest then, but I made a bracelet, and rested and pain levels came back down. And energy levels came back up.

I went to gym and did a harder workout than I’ve done in a year.  Unfortunately I had another allergic reaction, so I had to stop.  Point is, I was capable of working hard at gym ( or hard for a now very unfit, arthritic 47 year old.)  I’d usually be desperate for my next dose of pain meds now…I’m not desperate. I can hold off another hour.

All in all, an amazing response.  Pain levels are higher now…creeping up to a 7.  If it gets any worse, I’ll take the oxycodone.  But I’ll try to rest first.

It has been an awesome day though. I have real hope that life could change now.



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