I haven’t blogged in ages. I just don’t have the time. As a single mother of two high needs kids, I never have ‘free’ time. Any time not spend on the kids, or at medical appointments is devoted to making money, or exercise. Or I’ve collapsed on the couch, physically unable to do anything.
Life with a chronic illness like Rheumatoid Arthritis And Friends is like that.
Today I saw my rheumatologist. And he was…great!
Remember, this is the guy who told me I didn’t have RA. This is the guy that told me I was a ‘complete waste of his time’. This is the guy who told me that biologics are ‘expensive medications’ and they shouldn’t be ‘wasted’ on a person like me. The guy who promised me I could try every biologic there is, if I wanted. And then refused to prescribe.
Eventually I jumped through enough of his hoops to get him to prescribe Olumiant (baricitinib), a Jak inhibitor. Also, as I tapered down on prednisone, it becamse VERY clear that I definitely DO have RA, or at least some form of inflammatory arthritis. My hands looked like sausages last time I saw him, my ankles were cankles and my knees were balloons. He finally SAW the inflammation and palpated my joints, and agreed, yes, I have RA. And axial spondyloarthritis. And mixed connective tissue disease. Basically, inflammatory arthritis.
I worked so hard to get that baricitinib because Xeljanz, also a JAK inhibitor, worked well for me. Except, it messed with my liver. To the extent that I had hepatitis. I had an ultrasound, then an MRI, and was given the all clear. I tried Xeljanz again, and my liver function tests started rising again, definitely the xeljanz. So I ‘failed’ it.
My rheumatologist agreed, however, that another JAK inhibitor might help, but not cause the liver side effects. So he prescribed. Unfortunately, after two months of treatment, my liver function shot up to ten times normal. Today’s appointment was to reassess and decide where to go from here.
I had decided that I wasn’t prepared to try again. I am sure tht baricitinib caused the liver problems, and will do again. I asked for a higher dose of methotrexate, and was prepared to be discharged from his care. That’s what he’s been trying to do for months, get me off his patient list.
Instead, today he was caring, interested and talked me into trying a lower dose of baricitinib. Long story short, I’m going to take it on alternate days, test my liver function monthly.
He’s talked to my immunologist and my endocrinologist.
I saw my immunologist two weeks ago, and he said that I have to taper off prednisone, or risk dying. Not in the ‘we’re all dying’ way, but dying soon. He bluntly told me he’s concerned for a rare blood cancer, and he can’t test for it because prednisone skews the test results. So he strongly encouraged me to continue to taper. He called it a “life and death” situation.
That was a pretty big kick in the guts. I didn’t blog about it because my mantra is “don’t worry about it until it happens”. But it was scary.
Today, my rheumatologist encouraged me to continue, and told me that he would watch my liver function very carefully, call in a liver doctor for advice if necessary, do something called a ‘liver stiffness’ test, and get another MRI, because I need to get off prednisone.
Last time I saw him his treatment plan was to stay on 10mg of prednisone forever.
Today he said “we have to persevere with baricitinib, because of all your co-morbitities and your multiple complications, this is now a life and death situation.”
Sounded familiar. They have definitely talked. Which is great! But all my doctors are now united in scaring me. This is the main reason I’ve been struggling so hard. I don’t want to die. I don’t want to have suffered for the last 15 odd years, only to die alone and in pain. Nope. Not having it.
So, again long story short, I am following doctors orders. I have today switched back to hydrocortisone, equivalent of 7mg of prednisone. This is as low as I can get, historically, but I need to get lower. Maybe the baricitinib and methotrexate will allow me to do that.
I’ve also started taking DHEA. I believe it’s giving me more energy.
I recently had a bone density scan, and my bone density is still incredibly high. I definitely have some sort of rare bone disease, my doctors have never seen anything like this high bone density. Something in my bloodwork is making my immunologist think lymphoma (my cousin has leukemia, my other cousin has myeloma, and my father had lymphoma). My eosinophils sometimes spike too high, so he’s also concerned about an eosinophilic cancer.
Basically all my doctors are very serious right now. Very grave.
I don’t usually post about things until they’ve been diagnosed. To be honest that’s because people accuse me of drama-queening. Even when a diagnosis is certain, my ‘friends’ always diminish it. Tell me its not so serious. Don’t worry. And go off and talk about themselves again. I’m very tired of that.
I am really very sick. RA is a very small part of the picture. It’s a complicated picture. It started with RA, but my immunologist believes my arthritis is a symptom of a different disease entirely. Something much worse than RA.
I’m not going to pretend this isn’t serious, it is. I’m not going to tolerate people saying “Oh but you’re not SURE, don’t be such a drama queen.”.
I’ve been disabled by degenerated bones and joints for many years. The cause of my extremely high bone density is nothing good. The future is unclear. I am allowed to be worried. I am allowed to be a little afraid.