My liver MRI is completely normal. No masses, no lymphadenopathy, no ascites (no signs of cancer), no cirrhosis, no dilated ducts, or visible blockages, pancreas, kidneys and spleen all look normal.
So that’s good. Very good.
But it’s a problem.
The best outcome would have been some small stones lodged in the biliary ducts. That’s the kind of simple problem with a simple, surgical solution that medicine excels at. Unfortunately it’s not the kind of problem I usually have.
So I have no idea why I get ongoing upper GI pain. Whatever caused the pain, also caused liver damage, which appears to be healing (according to bloodwork) with no permanent damage, according to scans. I still have some upper GI tenderness, dark urine, nausea, bloating. But it is much improved. There is no question of brushing it off as nothing, but it is definitely improving.
But it will happen again.
And the big question is, did Xeljanz contribute?
No one will know. They will guess. My rheumatologist will say ‘Nope! Xejanz didn’t do it. Restart it.’
My GP (I suspect) will say “I don’t know. But I suspect that Xeljanz had something to do with it. I’m not sure we should restart it”
I tend to lean towards my imagined GP’s response. I’m not sure I’m game to start it again. I’ve seen others stop medication because it gives them indigestion or a rash. I’ve been forced to keep taking medications that cause suicidal depression, extreme anxiety, bipolar disorder head to toe skin infections and rashes, constant, unrelenting nausea…things like indigestion aren’t good enough reasons to stop a medication. Not in my world. Not in my rheumatologist’s world. She is much harder line about continuing with a medication than most it seems.
But Xeljanz is the only medication that has made a noticeable difference to my arthritis pain and swelling. It’s hard to give up on a medication that helps.
My guts say leave it alone though.
Either way, there’s a big decision to be made. I would love to sit down and talk it through with someone, pros and cons. My doctors don’t have time for that. I don’t have the kind of friends who will listen and help me make a decision.
So I’m going to do a prednisone burst, because either way, I’m off medication for a while. Until a decision is made about what to do next. My rheumy said we’d do a biopsy next, before being cleared to start back on Xeljanz. She often changes her mind though. Forgets. It will be easiest for her if I just start Xeljanz again. She’ll tell me we’ll monitor it closely, and all will be well, I’m sure. But I don’t trust her anymore. I don’t trust that she’s right.
A bit more prednisone will get me on my feet again. I hate the couch. I hate being this debilitated. I want to get back to gym. Back to functioning. Get my house in order.
Prednisone will allow me to breathe easier, literally. I’m going to assume that my lung problems are just allergic asthma. Which is very likely because everyone is struggling with allergies and hayfever this year. I never used to have allergies, but now I do. Life’s like that.
My rheumatologist will get the results this afternoon. She probably won’t look at them until Monday. She will call me on Wednesday or so. Make an appointment for fortnight Friday to discuss what to do next. I can’t stay in this shape. I am too sick right now, and prednisone will help a lot of it. I’ll have some energy, less pain and I’ll be able to hear better and have less tinnitus. Even the neuropathy in my hands and feet will improve. My eye flare will end. Prednisone makes a world of difference in many ways.
Bottom line, I don’t really have a choice. I’m not coping. My doctors do not understand how sick I am, or what life looks like right now. Prednisone helps. I’ll just bump it up a little, while I wait.