As I mentioned in my last post, I have had more good days than bad this week and am feeling much better in myself, even if the joint pain and swelling is still there.
This could be down to the Orencia and Methotrexate combination I started at the end of June; I have had three infusions so far and my next one is scheduled for August 25th. I was sure that I felt a difference after the first, I had more energy and even managed to have a dance at my friend’s wedding a couple of days later. However, at my last infusion, my rheumy was concerned that my test results were actually getting worse, which of course doesn’t fit. I was confused but decided to listen to my body and take every day for what it was; time would tell in the end.
I have read of other people who experienced an increase in wellbeing and energy levels, whilst being treated with Orencia, despite still having active disease and joint involvement. Perhaps this is the case for me, or maybe it just takes little longer to dampen down the inflammation? But there is another factor that could explain my current ‘wellness’ and that is where the dilemma comes into play:
Both times I have been on the better side I have been taking 20mg of Prednisolone, which I initially tried to taper off. The most recent increase to 20mg was just under two weeks ago and I’m still currently taking it, grateful for some relief. We all know how effective Prednisolone is at providing this short-term relief so it would seem that this is obviously to thank for my good days (in part at the very least).
But my worry is, how are we supposed to know how well a new drug is working for us if we ‘mask’ our symptoms and disease activity by taking Prednisolone and even pain killers? I know that the theory is to taper off the steroids after so long on the new treatment to see if it ‘holds’ things at bay, but how disappointing to go through months of treatment, convinced that it is working and find out that it was only the Prednisolone doing its stuff, not to mention the frustration of having to do it all over again with another drug.
I’m not suggesting we shouldn’t use steroids and pain killers to tide us over the worst times; in fact, I don’t even want to think how bad I’d feel without them! I just wish there was an easier way. It’s hard to explain to people that see me looking a little better and want to enthuse about my new treatment, that it might not be down to that after all – just a pred boost. Speaking of which, I saw my manager while I was out yesterday and immediately felt guilt ridden. There I am, out and about, yet unable to let them know even a general idea of when I’ll be fit to return to work.
This doesnt mean I have given up on the Orencia working for me. I’m probably being a bit impatient; after all, I was told it could take 3-6 months to really feel any benefits and I’m not even at the two month mark yet. I just don’t want to have to depend on the Prednisolone for good days over the next few months and I want to be able to tell whether my new treatment is helping or not – even a general idea would be good. If only scientists could produce a similar drug to Prednisolone, without all the horrible side effects, all of our problems would be solved.
It’s a battle of wills, but we must keep fighting.