Post ER trip number two, hepatitis and what’s next

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Good news with my liver ultrasound.  My liver is enlarged, as you would expect with hepatitis, all other organs (pancreas, spleen, kidneys) look normal.  There are no masses, collected fluids in the abdomen or lymphadenopathy (enlarged lymph nodes).  All of this takes cancer, chronic pancreatic and cirrhosis of the liver off the table.  And THAT is a huge relief.  I knew those weren’t very likely cause of the hepatitis, but they were possibilities.  And now they are ruled out.

My GP ordered a whole lot more bloodwork to figure out the cause of the hepatitis.  Possibilities he’s looking to rule out include congestive heart failure, an iron overload syndrome like hemachromatosis, Hepatitis B and C, autoimmune hepatitis, and medication toxicity.  Alcohol will have certainly contributed to my liver inflammation, but my liver enzymes are too high for it to have been caused by alcohol alone.

The most likely cause is medication toxicity, namely Xeljanz.  I am hoping, and I actually expect, the bloodwork will rule out the other possibilities, and Xeljanz will be on my prohibited medications list.

Livers are spectacularly good at repairing themselves, given the right conditions (no alcohol, no liver toxic medications, I’m told Milk Thistle is excellent for supporting liver function).  And logic tells me that everything will be fine.  My liver will recover.

But this episode has scared me more than most, for a few reasons.

Firstly, I just feel so sick.  The abdominal pain is still there. I feel very weak, and my muscles ache.  Just standing up is exhausting. And I really have been feeling this way for weeks…months even.  I did the prednisone burst to deal with some of this stuff.  And I did feel considerably better, but still quite ill.  Just worst since Friday night when the intense upper right GI pain started.

I am nauseous and have no appetite.  I always feel feverish, and sometimes run a mild fever.  I get breathless from the slightest exertion, and I often feel like I can’t get enough air.  My labs also imply I’m not getting enough oxygen.  I still have daily chest pain, and bouts of tachycardia, though they are less frequent.

bruises1And I have a lot of bruising.  Not a few bruises, but bruises everywhere, all over my arms and legs. The slightest touch brings up a large bruise.  I have taken pictures, but they don’t really show up very well.  But they look pretty terrible in the flesh, and they are definitely not normal.

And my other bloodwork is pretty screwy.  Red blood cells are off, so are the white cell counts.  All of these bloods were repeated yesterday, so I’ll wait until the new lot come through.  And my GP will interpret them professionally, rather than my amateur night guessing.

The most likely cause of the hepatitis (liver inflammation) is Xeljanz.  It is odd though, because just ten days ago I had bloodwork done for my rheumatologist, and she didn’t alert me to anything of concern. And she freaks out if my liver enzymes are double the normal range, let alone more than ten times.

I actually suspect she hasn’t even looked at my bloodwork, as she is overseas right now, and uncontactable.  I’m betting my bloodwork, with elevated liver enzymes are sitting in her in tray. I want a copy of those previous results.  I want to know if she did her job properly.  I want to know if this crisis could have been avoided.  Either way, I am moving on from her.  I will have to wait six months at least to see this new rheumatologist, but I think I need that time off biologicals to recover anyway.  I am in no way healthy enough to start any new treatments.

bruises2And this is another issue. I have now failed four biologicals.  You get five biologicals funded by medicare in Australia in your lifetime. There are ways around this, but with my record of horrific side effects and a 30% response at best, I can’t see any rheumatologist bending the rules for me.  And I’m not sure I want them to, anyway.  Each biological has either done nothing at all, or caused potentially life threatening side effects.  Most DMARDs have done me more harm than good.  I might just have to accept that prednisone, as low as I can get it, is my only option. That guarantees me a shorter life, and some kind of serious complication down the track.  Whether its diabetes, or blindness, or kidney failure, or osteoporosis, my doctors have all promised me that prednisone will get me in the end, and seriously shorten my life if I continue to take it.

But I have no other options, so for now, that goes to the back burner.  For now, everything does.

And lastly, I’ve been off Xeljanz for five days, and last night I went into full body megaflare, and here I remain.  All my joints are inflamed, and pain levels are 8 and up.  Oxycodone can’t manage it today, and while I could take more, oxycodone is metabolized through the liver.  So better to lie still, breathe, and stay under my heated throw than to put extra pressure on my working-way-too-hard, damaged liver.

I didn’t sleep much last night, so I’m very tired and very doped today.  Getting to the bathroom is quite the challenge, and I’m out of breath from doing so.  The wheelchair is easier than walking, but my shoulders are too sore and weak for me to really go anywhere in the chair.  If I had a proper power chair, I could get outside for a little while.  And I now accept that I need a full power chair if I want any kind of life, but unfortunately I am going to have to wait another six months for it.

So housebound I am, couch bound even.

The pain is horrible, severe, savage.  Long term, life won’t be worth living this way.  But I’m not thinking about that either now.  This will even out.  I had tapered to 15mg of prednisone as well as stopping the Xeljanz, so it’s a double whammy.  The pain will level off in time.  I’m too sick to work on range of motion exercises, or anything like that, to reduce pain.  I just need to rest.

And be grateful.  I have a lot of support on my facebook page, and I’ve some good friends messaging me.  Yesterday the friends that have been repeatedly rescuing me lately, came by again.  These friends have already helped me a great deal over the last few weeks, way above and beyond.  And believe me, they have more than enough on their own plate to deal with.  But I find its always the people who have their own problems and more than enough to do, who make time to help others.  And they cheered me up immensely.  Just having them to talk to, made me feel much better. They made me laugh and realise that everything will be Ok, and the liver stuff will resolve, it just might take some time.  And they convinced me to plan a holiday, with the kids.  Smart people.

So I think that’s what I’ll spend this afternoon doing.  Looking forwards.

10 COMMENTS

  1. Ouch, you have given me something to think about before taking on Xeljanz. I am so sorry my friend. Yu are traveling a difficult road for certain. Sheryl and I are wishing you the very best

    • Thanks Rick, and Sheryl too. I’m told this is a rare response to Xeljanz, but its always possible. I know so many people doing well with it, and it really was helping me before this happened. I very much hope that it works for you as well, with NO serious side effects. Best to you both as well Xx

  2. Those bruises don’t look good at all.Sounds like a case of hurry up and wait for the blood test results.Hope things are as simple as med.toxicity that seems the best of the options. Bloody hell if your results were bad and sitting on someone’s desk that’s terrible-surely there is someone to check results while rheumy is away. Hope the pain eases and you keep looking forwards.Take care.

    • Thanks Rochelle. If I DO find that she had those results, there will be some noise, I can promise you that. I’m feeling a little better every day, and that’s good enough for me right now. Thanks for your good wishes and I hope you’re doing well Xx

  3. As someone who so far in life has pretty much (all bar 2), been able to tolerate pretty much any med they’ve thrown at me, really do feel for those of you who struggle to find something that works and doesn’t throw your entire body off kilter. I have a very special friend, also in Australia, that is intolerant of most meds and is like you on Xeljanz as her last ditch attempt at a biologic. I have no idea how you and people in that boat cope I really don’t.
    All I can say is that I’m thinking of you and wishing you good lab results and hopefully sooner than 6 months, a decent rheumy who will work something out for you.
    For now, grab that remote, plenty to drink, some heat and a snuggly blanket and just take care of you. Do nothing, rest.

    • Thanks Gillian, that is very sound advice, and I intend to follow it exactly! Needing a lot of rest right now, and that’s OK. The medication thing gets to be a really hard choice. Right now I’m afraid to try any more, but the pain is ramping up. I suspect there will come a time when I am desperate for the chance at relief, and might just roll the dice one last time. I’m happy for you, and others, who tolerate meds well, and I hope you’re doing well. Even so its a b*tch of a disease! Best to you Xx

  4. Having been diagnosed back in 1985, I feel blessed that I’ve not had too many extras going on. Was on all the regular DMARDS, then Enbrel for about 15 years. When that relief tapered off, we tried Simponi and then Orencia – neither did any better. Been taking Xeljanz (with mtx) now for about three months and so far, so good. I did have a strange infection (staph) pop up on my toe that kept recurring but finally got it gone with addition of topical antibiotic. It’s a bad place to be in when you feel like you are at the end of the line of treatments. My question to you or any readers is: Has anyone tried any of the autoimmune protocol-type diets? Seems so restrictive and almost impossible to do to “heal your gut”, but I wonder if that could be of help. I do notice that giving up carbs and processed foods has reduced overall inflammation for me. I hope your liver recovers quickly and labs reveal some fixable solution.

    • Hi Mary, I have tried every diet known to man. In all honesty, my diet has always been based on whole foods, few carbs and very few processed foods. So while the AIP and others are difficult, it was doable. However I felt no benefit. Only more difficulty in planning and preparing meals. And then I developed multiple food allergies and Eosinophilic Esophagitis and now I am allergic to dairly, grains except rice and oats, most nuts, all seafood and I still need to properly challenge egg and soy. So my diet is extremely restrictive, and my arthritis just keeps progressing. Diet is certainly worth a try, but like medications, it will not work for everyone. In my very *personal* opinion, if your current diet is based on processed foods, lots of sugar and fat and few vegetables, diet change is definately going to help you. It will improve your general health, if nothing else. And you’re likely to lose some weight, which will help your inflammation levels and take some pressure of your joints. But if your diet is already based on whole, fresh foods, and your weight is within a normal range, then diet is less likely to change much. Just my opinion. It is ALWAYS worth trying, because unless you are doing an extreme elimination diet (as I was) it can’t hurt! If you are doing an extreme diet – and a lot of those touted to help autoimmune diseases are extreme – you should have a qualified dietitian monitoring you, because the last thing you need is extra fatigue and illness because you are becoming malnourished. I’m glad Xeljanz is helping you – it was doing me good too! I hope it continues to give you improvement. Take care Xx

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