Living with rheumatoid arthritis – when you can’t take Jak inhibitors anymore

Back in January I had my regular monthly bloodwork done, as I do most months. I get slack sometimes, and two or even three months go by and I skip the bloodwork.  I won’t be doing that anymore.

In January my liver enzymes were very high, over 20 times normal. This has happened before, back when I was on Xeljanz (Tofacitinib – a JAK inhibitor), though my liver abnormalities were not as severe.  My rheumatologist didn’t believe that Xeljanz was the problem, for two reasons :

1. I’d been on Xeljanz for many months with no problems, and the liver function results came “out of the blue” so to speak.  She didn’t feel this was the normal pattern she saw in her experience prescribing this medication.  And
2. Xeljanz doesn’t normally cause liver abnormalities this severe.

We stopped the medication and restarted three months later.  My liver enzymes started to climb again, and I chose to stop Xeljanz permanently as I didn’t want to take the risk.  My rheumatologist disagreed and referred me to a new rheumatologist for their opinion. 

Now, over three years later I’m experiencing the same thing with Olumiant (baricitinib, another JAK inhibitor).   My rheumatologist didn’t think the medication was the problem, because it’s a strange pattern that occurs.  I take the medication and everything is fine for many months, 6-12 months go by and everything is hunky dory. Then suddenly my liver enzymes shoot up.

This time my rheumatologist sent me to a hepatologist for evaluation.  He advised I stop all my rheumatoid arthritis medications that are liver toxic – baricitinib and methotrexate.  I still took plaquenil (hydroxychloroquine) but it does very little for my symptoms.

It has been a rough six weeks being unable to take my medications. The upside is that I found out that the combination of baricitinib and methotrexate work very well and keep my rheumatoid arthritis manageable.  I still have flares but they are short and only once or twice a fortnight does the RA pain get severe.

No, after seven weeks off my medication, the aches in most of my joints is constant and only varies in severity.  Right now it’s a deep, dull ache in my hands, feet, knees, hips and shoulders.  My lumbar spine is also painful, but I don’t know if that’s from inflammatory arthritis or degenerative arthritis.  My lumbar spine pain has definitely because more severe and constant since I’ve been off my medications, so I suspect there’s at least a component of inflammatory arthritis in my lumbar spine. I’ve been diagnosed and undiagnosed with axiel spondyloarthritis (ankylosing spondylitis) many times.  I’m not sure what my “official” status there is…it doesn’t matter.

Point is, I’m in much worse pain.  And pain is exhausting.  My body feels like its made of lead, and just doing simple tasks like washing a few dishes requires a nap to recover from.  The old chestnut of living with chronic pain being like picking up an elephant the moment you get up and not being able to put it down until you go to bed at night is very true.  Except my elephant comes to bed with me, and takes up all the room in the bed. 

Anywaaaaaay…back to the point.

I saw the hepatologist who did more blood work and ordered a fibroscan, which measures the flexibility of your liver.  On my initial visit he believed I had autoimmune hepatitis and prepared me for the treatment – moderate to high dose steroids.  Which I wasn’t looking forward to, but to be honest, corticosteroids always make my RA disappear and give me loads of energy, so there was an upside there.

I went for my follow up visit two days ago and to everyone’s great surprise, my liver bloods have normalied and I don’t have any of the autoimmune hepatitis antibodies (a couple of results are still outstanding, but the results so far make the diagnosis very unlikely).  So this is great news!  I don’t have autoimmune hepatitis, no steroids required, my liver has fixed itself in a few short weeks.

The downside is that my hepatologist now believes that the baricitinib is the problem.  When he looked into my history with tofacitinib he’s even more convinced.  He does admit though, that a reaction to these medications as high as mine is very unusual.  Not the typical clinical picture.  But given that everything has normalised, the medication being the problem is most likely scenario. There’s a very small chance that its autoimmune hepatitis, but is very unlikely.  My liver scan showed minimal fatty liver and minimal cirrhosis.  Also great news. 

But this means I can no longer take baricitinib, and in fact I can no longer take any JAK inhibitors.  These medications are the only medications that have controlled my rheumatoid arthritis.  I have tried TNF-alpha inhibitors (Enbrel and humira), Orencia and actemra.   Enbrel was ineffective, humira worked for a  while but had terrible side effects, Orencia worked for a while but I developed an allergic reaction, and actemra made me gain 25kgs that I’ve been unable to lose…and then it stopped working.

Both Xeljanz and Olumiant worked consistently for over a year, to the point that I was able to start jogging regularly again while I was on them, before the liver enzymes went and ruined everything.

There are currently no other options for me to try. I forget why I can’t have rituximab, but there was a reason. 

Yesterday I was allowed to restart methotrexate, which helps some.  I’m only on 10mg weekly, so hopefully I can increase the dose.  I have to make an appointment to see my rheumatologist, to work out what we do now. 

I am in permaflare.  I’m exhausted from dealing with pain.  Fatigue itself is a part of rheumatoid arthritis though, I don’t know how much fatigue is explained by fighting the pain and how much is just “there”.  I’m looking outside at a beautiful day and I want to take the dogs for a walk, let them explore and sniff and run and have fun.  But that’s impossible.  Walking to the kitchen is exhausting and painful, walking to the pond is impossible today.

Which is depressing.  I’m trying to not think about the future, and stay in the present moment.  I don’t want to imagine a future where every day is dealing with this kind of pain…again.  I have lived that life before, I lived it for many years.  I’d rather not have to live it again. 

Because of the current “opioid hysteria” my opioid use is being watched very closely. I have been tapered to a dose that is too low to manage my pain effectively, especially now that I cant take my RA medications.  Life would be better if I could take an extra dose of oxycodone and use it to take my puppies for a  walk, to get outside in the sun, to breathe the fresh air, and enjoy the outdoors and the company of my dogs. 

But I’m not allowed.  Everyone’s so afraid of addiction or overdose they’ve forgotten (or never understood) how devastating it is to live with constant, deep, aching pain that never lets up. Not for a second. 

The truth is the “good news” is actually the “not as bad” news, because autoimmune hepatitis would be worse.  But this isn’t great, either.  I actually wish I could take a steroid burst…I need a break from the pain. Instead, I will try to do something creative.  Its almost 11am, I’ve been up for five hours and I need a nap first.  My functional day is getting shorter and shorter.  And none of it is within my control. 

There are so many things that need doing. I can’t do any of them.  And I’m reminded of my sister and pseudo sister’s sage advice…you just need to get out more.  You just need to change your diet.  You just need to exercise more.  RA is NOT that bad, I know someone who has it and she’s not like YOU.

Well, RA is different for everyone.  I had a reprieve from the most severe symptoms for many months.  And now that reprieve is over. 

My hand and feet are burning.  My hips and shoulders ache, my knees are sharper.  Each step sends a “stabbie” through my knees.  My lumbar spine feels like there is knife lodged in it, and someone is twisting it at will. 

I am exhausted, and I’ve only been awake five hours.  I need to lie down.

But what people don’t ever realise or understand is that I feel sick.  I’m nauseous.  The smell of food makes me want to throw up.  It feels like every cell in my body is nauseous and I feel weak.  I have no energy, nothing in reserve.  This isn’t the kind of pain you can distract yourself from, its overwhelming.  I can take another pain pill in two hours…that seems a lifetime to wait.  I have to stop typing this post, because my hands hurt too much.  I’ve written this whole post in five minute bursts over the course of yesterday and today. 

And now I need to lie down.

I called my rheumatologist, I asked for an urgent appointment. Next available? 21st April. Thats another seven weeks to wait.