Living with rheumatoid arthritis and the difficult decisions – my liver or my quality of life?

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I’ve been taking Xeljanz for a week and I have a lot more energy.  At least 50% more, most days.  I am getting out of bed every day, and I have about 4 hours uptime, most days.

Today is rough, I went to physiotherapy this morning, and that’s it for me as far as physical things go.  I’m lying down now, resting.  Writing a blog in bed.  In the last week five days have been four hour days, and two days were two hour days.  Big improvement because before Xeljanz every day was a two hour day, or less.  I was sick and dizzy whenever I stood up and the fatigue and brain fog were ridiculous.  Non-functional person.

So this is much better.  Problem is my liver, it’s a matter of time before I develop liver injury.  Still, I want to stay on Xeljanz.  It is safer than long term prednisone, with fewer side effects.   I have emailed my rheumatologist to see if he will agree to putting me back on xeljanz, and not alternating with Rinvoq, as planned.  He may or may not agree, he knows best whether the risk is acceptable or not.

Why? Because xeljanz (and Olumiant) have caused liver injury in the past.  My liver recovered, but that may not always be true.  Blood tests don’t always pick up liver injury, and a lot of damage can happen before its noticed.   My liver enzymes were in the 400s last time and I needed to see a hepatologist for a full workup.  He concluded it was the JAK inhibitors and advised that I never take this class of medications again.  Too dangerous for my liver.

But.

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That doesn’t take into account that these are the only medications that give me some kind of quality of life. 

I do not want to spend my life in bed.  To me, that’s not much of a life.  Four hours a day of uptime, and being housebound, is not much of a life either. But its better.

Point being that managing my health is a constant game of risk vs benefit.  I mean, it is for everyone, but the risks I’m taking are much higher now.  This is a medication I have been told by a professor of hepatology I should never take again. He’s one of the top doctors in the country.  That’s his opinion.   It seems pretty stupid to go against his advice.

But…quality of life.

The only other option is prednisone, which no one wants me to take long term.  I’m already on hydrocortisone for adrenal insufficiency, and more hydrocortisone than my endocrinologist and immunologist hare comfortable with.  I’m currently still taking 4mg of prednisone daily because I couldn’t taper any lower without going into adrenal crisis. 

So xeljanz is the best of two not so great options.

I feel like I am making an informed decision, I feel like the risk is worth it.  Ultimately it is my rheumatologist’s decision.  He’s the guy with the prescription pad, and if things were to go horribly wrong, he’s the guy who would bear responsibility.  The final decision, in this instance, is his.

I wait and see what my rheumatologist says.

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