‘Emergency’ rheumatologist appointment to deal with my unhappy liver and unhappy lungs

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Once my rheumatologist finally got the message about my liver enzymes, she was quick to call me in. And the appointment was pretty quick too.  She was very efficient.  She immediately recognised that I’m having rather a big problem, and that was before I told her about my lungs.

On first glance she looked at my lung capacity and said there was nothing to worry about. Then I pointed out the ‘before’ and ‘after’ percentages and she agreed I need a more in depth pulmonary workup. So she wrote me a referral for another four tests – another spirometry test, a gas transfer factor test, a lung volume and Bronchial Provocation test.  I know what the spirometry test is, a repeat of what I did the other day. The other tests, I have no idea.  But she said that would give her a complete picture of my lung function, if its asthma, or Chronic Obstructive Pulmonary Disease (COPD), if it’s medication related.  I’m having those tests ASAP, which in the real world means in two weeks.

That’s OK. Thanks to my Ventolin inhaler, I am breathing much better now.  I was at my GP this morning and he agrees with this plan, but more importantly he’s going to try pull some strings and get me in to see Dr Dorai-Raj sooner than next August. Unlikely, but worth a try.

But back to rheumy.  We discussed the liver function results.  An AST of almost 489 and an ALT of 290.  She said she doesn’t see liver results that high very often, but she has another patient whose AST was almost 1000 and she is investigating that case as well.

In her opinion, liver enzymes that high and that become elevated that suddenly (I had a set of bloods taken 8 days previous that were completely normal) are NOT caused by medication. She said liver injury due to medication happens more gradually, slowly creeping up over months, not days.  And she hasn’t allowed any patient’s liver enzymes to get higher than double the normal range.

She also said that there shouldn’t be pain with a toxic liver.  Well let me tell you, there is pain!  At least every day I get the sharp, intense pain, but it usually only lasts a few minutes.  It feels like a long time, but it’s really only five minutes, ten tops. I time it.  Anything over 30 minutes and I’m calling an ambulance again.  That taboo is well and truly busted for me now.

Along with pain I have dark brown urine, nausea, vomiting daily, no appetite and extreme fatigue.  All signs of liver disease.  My enzymes have reduced (106 and 230 now) and are much improved, but still well above normal.

My rheumatologist is sure that Xeljanz is not to blame, but told me to stay off the medication until we figure out what IS causing the liver disease.  She said with medication toxicity, it’s a slow process and there’s no pain. Which is what makes it so insidious, and why its monitored so carefully.  It’s invisible.

A sudden attack of pain like I keep having points to something else entirely – a blockage, or a mass in the biliary tree (the ducts between the liver, pancreas, gall bladder), chronic pancreatitis, even cancer.  All those things I thought the ultrasound took off the table, she said are possible but unlikely.  She talked about stones being left behind, even after the gall bladder is removed, as the most likely cause.  She’s been talking about that for a while, but this time she is finally paying attention , and she has ordered an MRI of my liver.  Apparently it’s the best modality for visualising the biliary tree, and sometimes small masses can be missed on ultrasound and CT.  I don’t like the word ‘mass’ but that is a very, very unlikely option.  I’m just not feeling that lucky lately, so maybe I’m getting a little paranoid.

She said if the MRCP (Magnetic Resonance Cholangiopancreatography – MRI of the liver) shows nothing, then it will be exploratory surgery time.  I don’t like the sound of that either, but I really need to get to the bottom of this pain, so whatever it takes, as far as I’m concerned.  I’m glad the she seems as determined as I am to figure this out this time.  I just wish things could go a little faster.

I emailed my referral on Friday afternoon, explaining that I am in considerable pain and I need the MRCP urgently, and I haven’t even received a phone call yet (Monday 1pm) about an appointment time. They care so much about my pain. I’m touched!

MRIs usually have a couple of weeks waiting time. I’d really like to NOT have this upper GI pain anymore.  The only way for that to happen is to have this scan done quickly.  The pain isn’t bad enough for me to go to the ER and hope to get admitted and have it done that way.  I am not emergent enough. I’m just really uncomfortable.

So I just have to wait.  Just once I’d like the person who’s receiving my referral to read the part about ‘I’m in a lot of pain so I would very much appreciate your first available appointment’ and remember that there’s an actual human being out here, not just a piece of paper and a reference number.  An actual human being who is in pain.  Waiting is hard when you’re in pain.

My lungs are much improved now, and I’m breathing easily.  That’s a relief.  I’m grateful for that.  My rheumatologist also ordered me to reduce to 12.5mg or prednisone immediately, so as usual, 48 hours later I go into full body megaflare.  The pain is so bad today that even with too much oxycodone I am still in bad pain. I can’t stand up for long. Walking is not really a thing.  Lying on the couch, flat on my back is the thing.  And writing.  Venting.

I’m in a pretty low place physically, but I’m doing OK emotionally.  Mentally I am beyond foggy and I was going to try and organise the power wheelchair hire that my OT organised, but I can’t do it today. I don’t have the organisational ability.  I can’t deal with the logistics of booking a wheelchair friendly cab, calling my OT to arrange a time that suits her, and then actually being upright long enough to take the cab to the hospital, load up the chair, and then come back home.

Flat. On my back. On the couch.

For now.

4 COMMENTS

  1. It sounds like you need to be evaluated by a hepatologist who specializes in liver diseases. Perhaps a liver biopsy would be revealing. I also wonder if you have a drug-induced autoimmune hepatitis which could present similarly and you would probably have many of the symptoms you described. Hope they figure this out quickly.

    • I hope so too! I agree with everything you’re saying Essex, it just seems to be next to impossible to even get these appointments. Our system is expensive, and slow and totally uninterested in the chronically ill. Very frustrating! Thanks for your comments and good wishes 🙂

  2. Oh, the liver issues scare me. I am always concerned about my liver given part of my pancreas stopped worked 40+ years ago. Actually liver and kidney disease are common for people with diabetes and worse for people with RA. wishing you the very best.

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