Rheumatoid Arthritis - Infusion day plus one...

Back when I was first diagnosed, there were far fewer treatment options available - mind you, there were still many more than had been available not all that long before that! There were a few DMARDs (Disease Modifying Anti Rheumatic Drugs), but they were administered singly, whereas now, they're used in various combinations as it's been found that that's much more effective in controlling the disease. 

Move on another decade and a half, and well within the time when I wasn't seeing a rheumatologists, and the first of the biologics became available. These are now the most powerful drugs used to control RA. They're made from live human proteins, and they target specific parts of the autoimmune system in ways that interfere with disease activity - basically, they slow it down. I wrote a post about them for RABlogWeek last year which you can read HERE. 

I'm on Orencia. I started with weekly injections, but transferred to four weekly infusions, because I get a bigger dose that day. It has been good. It's definitely given me a significant improvement. I had my infusion yesterday, and it went well. It's hard, being needle phobic, having to have regular infusions, but the hospital where I go is nice, the staff are excellent, and they've been very understanding of my phobia and do everything they can to make sure everything goes as smoothly as possible to minimise any extra trauma.

Today, I have the headache from hell, which is a side effect I experience every time. I got it after every shot too, when I had those, so it can be argued that that's another benefit of the infusions, because now I just get it once every four weeks. It's a doozy. I feel as if I've got a massive clamp on my head, around my temples and eye sockets, and it's squeezing. Just nasty. The fatigue hits hard too - I crashed and slept for a few hours on the couch yesterday afternoon. And slept like a dead thing last night in between the times I woke up in pain. I'm still flaring - the flare that was tripped when Dragon Dad had his appendix emergency. So I went into this infusion in a bad way - pain meds upped to the max, still a lot of pain, and noticeable swelling. I'm sitting typing and am desperately trying to ignore my knees, which have skewers through them, twisting and turning, and my feet and ankles which are both burning and have awful pins and needles. So, I'm anticipating it'll be a good few days before I can expect any real improvement this time around.

I'm also starting to think that it's time to have THE conversation with the rheumatologist about whether it's time to look at changing biologics. This is a tough one. While the headache, fatigue, and sinus congestion (which I sometimes also get to varying degrees) aren't pleasant, they're doable, as far as side effects go. They could be much worse. I could be throwing up all over the place, or worse. And it is still having SOME effect. I have around two weeks in the middle of the cycle when I know I'll be doing OK. But the week leading up to the infusion can be dodgy as the beneficial effects of the drug start to wear off, and the week following can depend as much on how bad that last week was, as well as how bad the side effects are each time. So, it's highly unpredictable. 

I used to do better on this drug. There were some months I could get my pain meds down to one 50mg Tramadol SR for the day time. At the moment, I'm taking 150mg... And 200mg at night - so I'm pushing the outer limits of what can be taken. And while it helps, I'm by no means pain free. Last week, I was needing to top up with oxycodone. Add to that the deterioration in my shoulders, the now regular swelling and pain in my ankles that didn't used to be there, pins and needles in my feet - which suggest my circulation is being compromised, significantly more pain in my knees, and so on, I'm wondering whether it's the drug not being as effective, or whether it's a significant increase in disease activity.

It's a hard call. Given my ability to have extreme reactions to new medications, giving up a drug I know I can tolerate is a hard decision to make. Facing taking a new one is like facing stepping off a cliff. And then there's the issue of knowing exactly what's going on. IS it the disease getting much worse? And what does THAT mean? It's not something I let myself dwell on - because that's a pointless waste of emotional energy. But dealing with the everyday realities of a disease who's only known trajectory is that it gets worse, and having experiences that suggest that that's actually what's going on... That's really hard. And I don't know if I'm ready to face that. 

Relatively speaking, I'm still doing very well. I'm mobile, independently functional, and can do lots of things - and enjoy doing them. At the same time, I'm very aware that I don't feel very well at all most of the time at the moment. And that wasn't always the case. So something has changed. 

My next appointment with my rheumatologist is in May. And I have two more infusions before then. Anything could happen between now and then...