So it’s been well and truly six months of Orencia. My rheumatologist told me from the outset that Orencia is a slower acting biological. She said it could easily take six months for it to have any positive effects.
I promised to be patient. And started the injections. Orencia comes in pre-filled syringes, which I find to be pain free. Humira and Enbrel were both auto-injector pens, and they do sting. Some people say the pain is terrible, but I didn’t find that. There is a sting that lasts 10 seconds or so. A sharp jab. But its quickly over.
The pre-filled syringes, however, are completely pain free. I prefer them and will always choose syringes from now on where there is a choice!
So after six months is Orencia working?
I believe it is working a little bit. 20%? 30%? That’s as optimistic as I can get.
Orencia seems to mean that I have less joints flaring at once, but I still have at least six joints flaring every day. But over the last six months I have had fewer, full body mega flares where I am completely incapacitated on the couch. They still happen, however. I still have two knockdown days every week, on average.
I am finding fatigue is a bigger issue. This is not because my fatigue has gotten worse, but because my pain has improved, the fatigue seems a bigger issue. So that’s strangely a good thing, if you follow what I mean.
Over the last month or so I have noticed a ‘jump’…a noticeable improvement. Initially I was hit and miss with my methotrexate. I have had terrible problems with this drug, and I truly hate it. It scares me what it can do to me. But for the last six weeks I have been taking it religiously, 7.5mg per week. And my symptoms have been improving. Methotrexate does work for me, even at such a small dose. And I think combined with Orencia, it is making a difference.
The combination seems to be working. The question is how much improvement will I get? I am still on 15mg of prednisone daily. And 40-60mg of oxycodone daily. So I am still a long way from doing ‘OK’. I’m not even going to try and reduce my prednisone until next year. I’m going to stay stable for a few months. My bone density is good. My eyes are OK. My blood sugar is controlled. I am going to enjoy Christmas and the New Year and not make everything impossible on myself by tapering the prednisone.
I hope I can reduce my oxycodone intake.
And as for side effects, they are mild. Mostly a headache, extra fatigue and some nausea the day after my injection. Considering some of the side effects I’ve experienced, these don’t bother me much. The headaches are annoying, not crippling. And I’ve had some mild site reactions. Again, nothing compared to what I’ve seen other people suffer.
So I am happy to continue on Orencia. My next rheumatologist appointment is February. I hope for more improvement by then. If not, it will be time to move on, because I’m not getting enough from Orencia. But I am getting enough so that I still have hope that there may be more improvement.
We will see what another two months brings.