It’s been 8 weeks since my last Infliximab infusion; they start you off with a loading dose every two weeks, then every four and finally it goes to every 8 weeks. I should have had the infusion today but my Rheumatologist was away and since we need to discuss a few thing we decided to wait a week (at that point I was doing fine).
I’m still doing much better and I’m really pleased we tried the Infiximab and with the results so far, but I think I might need it more frequently than every 8 weeks. By the time we got to week 6, I was noticing I was flagging a bit – feeling very weak and tired most days, to the point of falling asleep on the sofa unable to fight the fatigue. At first I put it down to being tired; after all I’m doing so much more than I’ve been able to in a long time, it’s bound to take its toll.
But over the past week or two, I have developed quite sore hand/finger/thumb/wrist joints. In the mornings my hands are like claws and take a while to unfurl. Even when they do, they remain sore the whole day and I’m finding it hard to type or use my phone. And now, the dreaded temps and Still’s rash have started to make an appearance every now and again. Boo.
I’m sure it’s only temporary and I’ll notice some improvement after my infusion next week. My Rheumy did say there was room to play about with the dosage/frequency of this drug so hopefully we will be able to adjust it to my needs. I’m sure it would be better for everyone to have me reach some level of stability rather than so many good weeks, with a couple of dodgy ones on the end of each infusion period.
For now, I’m taking things a bit easier and soaking my hands in warm water a few times a day to get some movement / relief.