Fast Forward to Christmas 2020 –
Drug Induced What?
By December, my consultants were questioning if Infliximab was working or not for me as it was literally leaving my body as quick as I was receiving it. They decided to have one last ditch attempt, give me the ‘mother load’ of infusion again and mix it with some new medication, to see if we could get the right concoction of drugs to put me into remission…
Well I felt great, was back at work, Christmas on the horizon and feeling optimistic that 2021 would be a good year. I remember talking to my boss the Friday before I broke up for holiday and saying how well I had got on, but what started as a bit of joint pain, had got so bad I struggled to type an email, so it was a good job I was in MS Teams meetings all day. If only I had known how that would play out…
Within the space of a few days, I had deteriorated to such an extent that I couldn’t hold a pen or cup of tea. I couldn’t lift my arms to put my hair in a bobble. I couldn’t even get up and down off the sofa or toilet without screaming in pain. You all know those scary movies where you are trapped inside a body, but you can’t move your muscles… that was me this Christmas.
I literally spoke to anyone who would listen to me. The only thing I could do was stay high on pain relief as everyone had broken up for Christmas. It was only when my mom saw me screaming in pain trying to get up half a flight of stairs, that the reality hit me, how ill I had become. The only thing stopping me from going straight to A&E was missing the children’s Christmas… I wasn’t going to miss that no matter how much pain I was in. Much as I loved spending Christmas with the children, every minute of every day was literally torture, eked out by my inability to lie down in bed for the pain I was in. What became apparent with the stairs, was although my joints were painful, it was actually breathing that was causing my additional pain.
Joys of A&E
I could not wait for what I thought was the first working day after Christmas. Only to discover it was a bank holiday! I had the lovely ambulance crew turn up on a snowy day (just picture an ambulance driving to the top of the hill where there are no gritters – my own helter skelter ride). That first visit to A&E to be frank was a waste of time. A chest xray and blood tests, only to be sent back home again with no explanation other than to take more steroids and have antibiotics.
I left a voicemail for my IBD team questioning about how 1 week’s worth of steroids would help and how to reduce off them. I struggled with every breath to make that call. To my surprise, the following night the gastro doctor called me and explained he was concerned I might have a pulmonary embolism (blood clot to you and me!) from the Infliximab and asked me to go back to A&E to be admitted to hospital. To this day, I am so grateful for his call otherwise I believe I’d still be in the same situation now.
I was promptly seen the following morning and after a CT scan showed I had fluid and inflammation on my lungs and thankfully not a blood clot. I then met a Rheumatology consultant who was surrounded by 3 Junior Doctors. You know it’s something when a Doctor states “Well this is an interesting case”. As my joint pain changed location and I’d been keeping track of my symptoms in relation to my various different medication, I was diagnosed with Drug Induced Lupus. Basically, it is a rare reaction to infliximab that displays lupus symptoms which should go when they are out of your system, but could take several months to get back to normal. I spent a joyful NYE in hospital but thankfully returned home packed to the brim with yet more medication and another condition to research to death with Dr Google!