Morphine, IV Steroids, and Mycophenolate... I could start my own pharmacy

It’s been a month since I sat in hospital for 5 days, 3 of which where I was having steroids flowing through my veins at 65 times my usual daily dosage. The reason? My body had been flaring and nothing could control the pain and fatigue that I was in so drastic measures had to be taken and a hospital admission was our only option. It was a mission to organise, and hospital admissions didn’t understand my need for being there, but Mark, the immunology registrar on my case was advocating for me and after one of conversations realised how severe I had gotten so suggested that if I could make it to Sydney, I be admitted via emergency. So plans were made. We booked fights, a night in a backpackers, and jumped on the train the following evening. It was two days of travel but we finally arrived at Westmead emergency room on Wednesday at 11:30am.

I’ve said it before, and I’ll say it again: the ER doesn’t like the chronically ill. The doctor who first saw me, while he was efficient and listened to me, he was somewhat rude to mum. You see I suffer from brain fog. I struggle to put my thoughts in order and this is even more prevalent when I’m in pain, so I look to mum for help, but he just blatantly ignored her. After awhile mum turned around and politely informed him and the nurse currently taking my obs that “Jordy suffers from chronic brain fog and so I sometimes answer for her as she struggles with processing her thoughts” and his attitude towards her thankfully changed. Here’s one thing, never mess with mum, she’ll go straight into Mumma Bear mode. Another factor to the attitude adjustment was when my vitals jumped up on the screen; resting heart rate of 111bpm, high blood pressure, and low blood O2 levels. That’s one thing you can’t fake. So a healthy dose of morphine was pumped in through the newly placed cannula and my head felt the rush. Oxycodone was also administered and for the first time in months, I was headache free!

Again we were faced with the same challenges of “how do you spell that?” “I’m sorry it effects what?” “So it’s kind of like lupus?” and eventually the right people were phoned and I saw Mark in the emergency room with Doctor Lin, who was covering for Doctor Brown while he was away for the week. Both of them stressed that they were glad that I had come in when I did because they could see how terrible I was doing, even though this was the first time meeting them both. I think the fact that the bed sheets had more colour than me was a bit of a concern. Eventually I was admitted onto the Complex and Chronic Patients Ward, and Mark saw me that night to explain the plan; three days of IV methyl-prednisone then two days of 50mg oral prednisone and also an MRI on my thighs to try see if there was any inflammation or cause for the extreme weakness that I was getting. After that we would wait for Doctor Brown to get back on the Monday to then discuss a long-term plan. You see the methotrexate I was on should’ve been working by now. I’ve been on 20mg for a long time, and while it takes a bit of time for it to work, if there was to be an effect it should’ve happened. So that kind of takes us back to square 1. Or really square 1.5 considering prednisone has been working; we just need an alternative because steroids aren’t the long-term answer for this!

Three days passed, I was hooked up every morning and sat there for a couple hours while the drips slowly ran and the steroids pumped into me. I’ll admit, I was scared, terrified actually! Brain surgery I could face. I was asleep for that and woke up in ICU not knowing what to expect and just having to embrace what was to come. But this, this felt different. I don’t know if I was hoping for a miracle and after the first dose be ready to run down the halls but that certainly wasn’t the case! The second day I was running a low-grade fever and still had no colour. A came of speed was only made fair because my best friend had gotten no sleep so his mental capacity was running only slightly faster than mine. And the third and final day I slept most of it away. That was the most surprising to all the doctors and nurses, the fact that I could still sleep! Steroids induce insomnia so they give the dose (oral or IV) in the morning, but every night I slept straight through, only waking when they came around for vitals. And that last day I slept for almost six hours in the morning after only waking to eat a minimal breakfast, and then managed a full nights sleep, but alas I still did not wake refreshed. That’s the thing about chronic fatigue and being ill; no matter how much you sleep your batteries never recharge!

Sunday and Monday I was back to 50mg oral prednisone, a dose I hate with a passion and makes me cringe. I experienced so many horrible side effects at this dosage that the thought of staying here just revolts me and thankfully my doctors thought the same. Monday morning Dr B came and saw me with his team. Waking up had been a bit difficult that morning but I managed a shower and my joints did feel a small improvement, not drastically, but a little. We talked, we went over options, what we had tried, what we knew, and what we could do next. Something he stressed and repeated was this; “You have this anti-ku antibody, it’s extremely rare and we honestly don’t know much about it except in you it effects predominately your joints so right now we’re just trying for the best”. It was hard to hear. I had been hoping for more answers or any clue as to what was going on in my body but still we we’re turning up blank, or just with this one little marker. Our biggest concern now was my bones and the side effects from being on steroids for so long, so we needed a new plan.

Mycophenolate; yet another immune suppression medication just even stronger. I’m still on steroids and I’m still on chemo. And still on everything for my chiari and headaches. We can’t forget about those. We’re trying to bring the steroids down to below 10mg which was the original goal and my chemo medication will be staying the same. But this medication is usually used after people have heart and liver transplants because it stops the immune system from attacking the new organ. In this case the organ is essentially my joints and we want my immune system to stop attacking it! Again this is a medication not without risk. I’m now at a huge increase of infection because my immune system is going to be lowered and if I show signs of infection it’s straight to the emergency room. I’ve got to be super vigilant on hand washing, germ control, and bacteria. For someone who drinks out of the same bottle as almost anyone this is going to be hard! I’ve always been the type of person with the attitude of “My body can handle it” but now it obviously can’t. When flying back from Sydney to Melbourne mum even made me wear a mask because of my lowered immune system from the IV steroids I had just undergone… yeah that was a new experience but most likely something I’ll have to go through again and again. There will probably even be a permanent investment in a facemask because all the hygienic ones from the chemists make you look like a duck. But hey, at least it covers my steroid induced moonface!

It’s going to take about two months for this new med to work and I hope they do because I don’t really know where to from there. I mean now we know what to do if I’m in a flare, but the fact remains that this anti-body had taken over so quickly and had me bedbound and to the point where we were about to buy a wheelchair because I was in so much pain and so fatigued that leaving the house was hardly an option. Travelling in this condition hasn’t been easy but thankfully we’ve been at the farm and for the moment that’s where we’ll stay because it gives us a base while my body sorts it’s self out to the best of it’s abilities. So two months, that’s when I’ll hopefully begin to see signs of improvement, maybe even a remission. I honestly don’t know how I made it through this hospital admission, being poked and prodded which has resulted in me being bruised in all limbs thanks to cannulas and endless blood draws. But it’s back to the farm and camels for me. Just no camel kisses from the babies: as per the doctor’s orders.