The plan is to restart Xeljanz – Dec 2016

So I dragged my bones down to the pathology lab to get my bloodwork done.  Last bloodwork was about two weeks ago, and the numbers were heading down, landing around four times the top of the range. So, four times higher than they should be.

Four times doesn’t sound like much when they were almost 20 times higher than they should be the week before that, but it is still too high. Have to keep reminding myself of that.  I very quickly start thinking in terms of ‘relatively’ when with bloodwork, you really need to work with absolute numbers.

Normal is under 30.  Mine were in the 120s.  Too high.

So we’re checking where my liver enzymes are now. Given that my liver ultrasound, and liver MRI were both clear, there is good reason to expect my enzymes have normalised and my liver is healing well.  Livers are good that way.

The plan is, if my liver enzymes are within the normal range, to restart Xeljanz at a half dose, so 5mg per day.  My rheumatologist does not believe that Xeljanz was the cause of my liver adventure, nor did it contribute.

I think it contributed.  But I want to start it again, given that it’s one of only two medications that have made a significant difference to my rheumatoid arthritis symptoms,  it wouldn’t be smart to assume. I have to be sure.  I have to test it.

I never blame a drug for a side effect unless I have repeated the situation at least once.  I see people saying they stopped a drug because it caused a rash, so they fail it.  But they don’t test it, they just refuse to take it away. Personally, I think that’s crazy.  You have to test it once or maybe twice to be sure.

Methotrexate was the only other drug that gave me benefit, but it caused severe depression and suicidal ideation.  I started and stopped it at least five times.  I am VERY sure it’s the causative factor.  And it’s also possible that methotrexate has damaged my lungs, so its defineately off the table now.  Which is a shame, cos it seems that the only drugs that help me, also want to give me, but at least I am 100% certain.

I need to be 100% certain with Xeljanz as well.  I will take the half dose, and have my liver enzymes monitored every fortnight.  If they elevate even a little, Xeljanz is a fail.  If, after four weeks, my enzymes are still within the normal range, I will start the full dose – 10mg.  And keep monitoring fortnightly for a month.  If all is good then, monitor monthly for six months.   Make it through all that, and I can stop the monitoring.

Sounds like a plan.

I’m not sure that 5mg will help at all, but I can hope.  Being at 25mg of prednisone is not a viable option for long.  I will have to start tapering very soon.  And it will be hard to say bye-bye to being upright.  Right now I have somewhere between 4 and 6 functional hours a day, depending on how much rest I need in the middle. That’s not much to a ‘normal’ but it’s a whole lot more than I’ve had in many months.

Previous to the prednisone I was on the couch all day, and that’s because I had no choice.  Life falls apart when you’re the only adult in the house and you’re stuck to the couch. So if there was a way to get up and DO, I would have.

I’ll get the results in a few days.  And then hopefully I can restart Xeljanz.  Here’s hoping.