Medicines, Infliximab and Drug Induced Lupus
I sit here writing tonight, trying to grab a spare 5mins before I really should go to sleep, struggling to hold a pen (yes, I actually write before I type… at the moment anyway until I actually get the technology in place).
I can hear my fellow chronie’s saying it is Rheumatoid Arthirtis? Well at this stage I think the answer is no, which I’ll try to explain why and how we got to today.
Like many newly diagnosed Chronie’s I was automatically put on steroids (prednisolone) and within a few days, I felt completely rejuvenated! I had already been on a load of medication before my first hospital appointment with the specialist nurse for “the chat”. By the time my appointment had arrived I had already researched literally to death about ulcerative colitis (U.C.) and potential medications. I remember to this day the lovely nurse trying to give me this very serious news about UC, with my husband beside me, how it was going to alter my life and all I could think “wohoo” I don’t need to worry, I feel great, steroids are fantastic! I literally felt on top of the world after months of feeling awful. By the time late Jan/early Feb arrived, the steroids were long gone a lot of my system and my symptoms started to worsen.
Anyone who has been on a course of steroids will tell you, they have both their ups and downs. For me, my ups – not dashing to the loo in agony every 5mins. My downs and demons – a constant round “moon face” and an appetite bigger than a lion = weight gain. Well back in Jan/Feb 2020 – I couldn’t care less, they just made me feel better! However, by the summer my symptoms started to reappear.
I recall my IBD specialist nurse, Sam, my saviour, saying you really shouldn’t have more than 2 sets of steroids in any 12 months but by summer, we started back on again while we discussed the next course of treatment. At this time we are in the middle of a pandemic when having steroids is far from ideal having a weakened immune system is not great as far as COVID is concerned. In the summer though, for me at least, I was optimistic – we were going out again, sun was shining, but I knew I just had to be extra careful so minimised my social contact, although shielding wasn’t in place at that time.
Biologics – Infliximab – My New Saviour?
So when it came to discuss next type of treatment I was given two choices. I dutifully did my research on Crohn’s & Colitis UK and opted for infliximab. From my perspective, they were both similar, both affected your immune system, but with one you had to have regular injections, which turned into self care, the other infusions (infliximab) in hospital. I don’t mind needles per say, but one thing I am not keen on is, doing it myself! (the downside of having c-sections!) To me the stats also looked in favour of infliximab in terms of effectiveness.
From August I then started my 8 weekly infusions of infliximab after a series of blood tests of TB and other issues. When it came to my first infusion I was a little apprehensive, but definitely didn’t need to be. The lovely ladies gave me a private room (due to COVID) where you have a reclining chair, tea and biscuits to your galore (to keep your blood sugar and BP up) and most importantly, 3 hours of time to yourself – a rare commodity when you have children, a pandemic and only get out of the house for medical appointments! After having the cannula fitted and the drip started, the nurses monitor you closely, but other than general chat, you are left to enjoy the solitude!
As it was in the middle of the working day for me, the first time I ended up doing work emails, whilst subsequent visits I took my laptop and downloaded MS Teams on my mobile so I could still have meetings whilst sat there! The laptop didn’t work out particularly well as you can’t really type with a cannula or work whilst hearing about the nurses home drama. By the latter sessions, I took to just enjoying the peace and quiet, rest without work as I was feeling tired. Beyond feeling woozy after the treatment, I felt in a good place. Then fast forward to Christmas 2020 with a change in diagnosis to Chron’s following a colonoscopy, was infliximab all it was cracked up to be?