The truth about living with Rheumatoid Arthritis

rheumatologist appointment Jan 2017 – no prednisone infusion

So yesterdays rheumy appointment.

She refused the methyprednisone infusion treatment.  She doesn’t believe it would help me.

She has told me to up my prednisone back up to 50mg, and then taper by 12.5mg every week til 25mg, and then taper by fives until I get back to 15mg.

Because I wound up back in the ER with upper GI pain recently, she thinks it might be time to fail Xeljanz.  But I only have one biological left, and so it’s a difficult decision.  I told her that Xeljanz doesn’t do enough, regardless.  We got into a debate, with her telling me I had told her that it had helped.  I said yes, it had helped, and more than any other treatment has, but not enough to be worthwhile.

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Dr Efficient and just like that she prescribed my opioids

And just as simple as that, Dr Efficient prescribed my oxycodone. I told her the last few days have been nothing short of torture and she expressed surprise that no other doctor would prescribe my opioids. She apologised, I told her it wasn’t her fault, and thanked her profusely. She remained mystified at my emotion and why my pain medications were refused. She asked how my 50mg burst had gone and if I had followed her advice (50mg x 5 days, 25mg x 5 days, and now down to my usual 15mg). I told her I had, and that while on 50mg I had a weekend at the coast and did a 5km walk. Something I haven’t been able to do in at least 4 years. She said that was amazing, as was the degree of deterioration since. She even said she wished she could organise a prednisone infusion for me today, but she didn’t have the authority. But she felt sure my rheumatologist would ‘get onto it’. She said she believes that monthly infusions are the only hope left for me and genuinely wished me luck.
I went to the pharmacy and filled my scripts. I took a dose 30 minutes ago, but I think I will need to take another dose to get on top of this level of pain. I was awake for most of the night and I am emotionally wrung out. My kids are still asleep so at least I can cry openly in peace. The last few days have been torture. There’s an emotional toll for that. The only upside is that I do know that I can’t cope without the oxycodone, and that I have to fight for the prednisone infusion. I know the risks. It should be my choice, and my choice is quality over quantity. My rheumatologist tries to tell me I am not severe enough to make the risks worthwhile, but I have to wonder how much worse things have to get? Exactly where does she draw the line? It doesn’t matter. That’s tomorrow’s battle. Right now I’m back on the couch, under my heated throw, with my psycho cat. And at least right now, I know that in an hour the pain will be under control. With a bit of luck I might even be asleep. And when I wake up this afternoon the world will be a better place. And there will be hope. 

The Chicklet and her anxiety and my own head space

I am so unbelievably tired.  And I’m in more pain than usual, because I have taken my one pain pill for today.  And slow release is rubbish.

The Chicklet is not well. She has gastro and we all know that’s not fun.  A lot of us auto-immuners have gastro pretty constantly anyway, so I’m sure there’s a lot of empathy out there for her.

But here’s the thing. She works herself into a frenzy about gastro. She always has. For some reason she thinks she’s dying and has developed a deep anxiety about all things tummy ache!

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The NDIS and how that’s working for me

Whelp, the NDIS lady finally came over yesterday.   Two months after having my plan approved, with all this money sitting in a bank account and me having no idea how to access it, she came over to explain it all.

I have been trying to get her to explain it for all of those two months. She’s made three previous appointments, then broken them. This time she came, and she brought a service provider to do my house cleaning for me.  It looked promising.  But I’m still left a bit WTF about the whole NDIS thing.

I keep explaining to people I need things written down. I have a terrible memory, I mean really terrible. And I don’t understand information when people bark it at me in a great big glut.  You need to speak to me slowly, and break things down one point at a time. My brain doesn’t work the way it used to. This is a source of great upset to me, so by talking fast and looking annoyed at having to repeat yourself, you’re actually making me feel a whole lot worse about it all.  It’s very confronting to have to ask people to speak more slowly, and to repeat themselves, when once upon a time you were a bright, clever person.

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The ‘opioid crisis’ comes home

So the ‘opioid crisis’ is about to bite me in a ass. My usual GP is on holidays until February. There are at least 8 GPs that work at the practice (my GP is the principal). None of the other doctors will prescribe oxycodone, despite my six year history being available to them. They just refuse to prescribe oxycodone, full stop. There is one other GP who will, but he is also unavailable. Which leaves me with Dr Efficient, who prescribed my prednisone burst and is very familiar with my case, so she *may* prescribe me a few weeks worth until my regular GP returns. She isn’t a fan of oxycodone however (none of us are), but given that she saw the kind of shape I was in last week, she might just relent. But that appointment is on Monday, by which time I will have been out for two days. Add that to the pred taper and its going to be a very interesting weekend.

Still, I guess it might be good for me to go without pain meds for while. And I still have some slow release, but I don’t find those work terribly well, certainly not on their own. They also tend to affect me a lot more cognitively. I have no idea why, but i feel much more doped on Targin slow release than oxynorm immediate release, despite oxycodone being the active ingredient in each. But it will be good to see what the pain is like with minimal pain medation. I’ll look at it as a good thing. An experiment. I don’t really want to be on oxycodone anyway. And tapering prednisone sux, but I’m taking 25mg, which is still a whacking dose. Time to do a detox and see what happens. Ration out my last 6 pills and see how it goes.