So, freshly armed with Endone, I headed off to see rheumy. Amazingly good luck to get an appointment the same day I called, but I couldn’t have gotten myself there without pain meds. They work fast on an empty stomach. Only 30-40 minutes and I can feel an improvement.
She was running late, and that usually means she’ll be rushed. So I was working myself into a negative head space. Always a mistake.
When it was finally my turn she noticed how slowly I was moving, but she’s seen that before. Before I even sat down she apologised for not returning my calls. She had been reviewing my latest blood work and wanted to talk to me about it. She told me she really hadn’t known which drug to try next, because absolutely nothing had worked so far. We only have five biologics covered by medicare in Australia, and I’ve already tried two.
She felt another TNF blocker would be unlikely to be effective, because I’ve already tried two (Enbrel and Humira), and neither helped my symptoms for long, if at all.
If I can’t take methotrexate, that only leaves one option – Actemra. We’ve talked about that before.
But, looking at my latest blood work, my ANA is now high titre, rather than the low titre positive it usually is. So that has lead her to believe that Orencia is the best option, as it seems to work best with people who have Rhupus or RA/Lupus crossover.
The high ANA titre, combined with Raynauds, livedo reticularis and of course the very attractive malar rash I get every so often point to a lupus flare. I also have relatively little damage, after 8 years of active inflammatory arthritis. Not much in the way of bone erosions, just cartilage damage. The arthritis of Lupus tends to be non-erosive. So Lupus has always been an alternate diagnosis.
But the symmetrical pattern of my arthritis and the severity of the pain and active synovitis look more like Rheumatoid Arthritis. Raynaud’s is common in RA as well. I meet the criteria for Rheumatoid Arthritis easily. With my fluctuating ANA and usually negative Anti-dsDNA tests, lupus is not so clear cut.
More recently rheumy has been focussing on the seronegative spondyloarthropy angle. I have definite SI joint and spinal involvement, though I am negative for HLA B27. She expected TNF blockers to work for me, based on these signs.
But they didn’t. So time for a new class of medication.
Orencia is a T-Cell inhibitor. T-Cells are involved earlier in the inflammatory chain. It’s like hitting the inflammation right at the beginning. Or so she tells me. That sounds good to me.
It’s available as a weekly injection, which is far more convenient than an infusion at the hospital. So that sounds good too. I’m used to injections. They don’t bother me.
The side effects are similar to TNF blockers. The only down side is that I have to take a small dose of methotrexate to qualify for the medication. That’s a big problem for me, but it’s a very small dose. The way I have been feeling lately, I will do anything to feel better. So baby mtx it is.
Still taking Arava as well.
And, of course, up the prednisone to 30mg to get back on my feet and moving again. Then taper relatively quickly to 15mg, then slowly taper further from there.
Orencia will take 2-3 weeks to approve. And she warned me it is slower acting than most other biologicals. So it will be at least 6 weeks before we can expect any improvement. So I will need prednisone to tide me over.
I’m relieved.
She was much more like the original rheumy I met 18 months ago. She was proactive and in control. She was confident but sympathetic and caring as well.
I did ask her point blank if she thought anything would help me at this point.
She said all we could do is keep trying. She said she is not giving up. I needed to hear that.
I feel like she’s on my side again. And I probably judged her too harshly.
I have hope again. And I have pain killers.
Last night was better. Five straight hours of sleep. Being able to sleep means I’ve turned the corner on this flare. I took 30mg of prednisone this morning. It usually takes 2-3 days to start to help. Today has still been a couch day. It’s still a mega-flare. The pain is still bad. But the fatigue is incredible. But whether it’s a lupus flare or a rheumatoid flare is something that only textbook types care about.
My head is in a better place. I’m still feeling sorry for myself some, though. I still have moments where it just feels too hard. Where it’s not fair. Where I am angry that I am at bottom again, and that I have to pull myself back up. Where I am angry that I have to deal with this on my own. Where I wonder why I wasn’t worth taking care of. But that’s fading. It doesn’t really matter. It is what it is. I’m getting stronger again.
I will stay on the couch until I don’t need to take Endone to get my kids up and ready for school. I have planned healthy meals and I am forcing myself to eat. One day soon I will feel ready to get back to the gym, and I’ll start light exercise again.
One day soon.
Hi there, I’m so glad that this apt was so much more positive, that she said she is not giving up and that she clearly has been giving some serious thought to which way to go with you next. I really hope this med will be the one, I know you’ve been here before & I’ve said that before but each new drug is a ray of hope & we have to keep hoping right!
I doubt there are many of us who have never ever come away from an apt feeling hopeless and like our rheumy isn’t listening properly or taking us seriously, I know I have and I love my rheumy, but sometimes I just wish they really knew what each day, each struggle was like for us, instead of the 20 minutes each 3-6 months that they see us, trying to keep a smile on our faces so we don’t sound like we’re complaining. If they saw how we are every day I’m sure it’d be a different story.
Anyway I’m glad that you got the pain relief and the pred & I wish you luck on this next leg of the journey. I hope the Orencia is approved soon so you can get started & I have my fingers (metaphorically), crossed.