Today, I’m at the hospital for my first Infliximab infusion of this year. I can always tell when I’m due an infusion, my body starts to shut down. The fatigue, joint pain, stomach cramps and nausea start getting the better of me.
Infliximab (or also known as Remsima) is used to treat severe Crohns to try to get it into remission. It is a TNF inhibitor, and it acts against a protein known as tumor necrosis factor alpha (TNFα). It searches out, finds, and binds to TNFα, and it blocks its inflammatory effect. This activity reduces inflammation and pain for patients with autoimmune diseases. Infliximab is also a form of chemotherapy.
I’ve been on Infliximab for 13 months now. Every 6 weeks, I come to the hospital and get hooked up to an IV drip for half an hour. The room is lifeless, seats lined up along each wall, with everyone hooked up to some kind of machine. It’s like a living graveyard. Every patients eyes to the floor, only looking up to answer questions asked of them.
I always end up staying longer than I am meant to because they can never get the cannula in my vein. Not because they’re incompetent, because I’ve had so many cannulas, my veins shrink and disappear as soon as they attempt to put it in.
When I was first diagnosed, the consultants tried me on a drug called Azathioprine, works in a similar way to Infliximab, but in tablet form. About a week into taking this, I developed an excruciating pain just below my sternum which turned out to be pancreatitis brought on by the new drug. They promptly stopped this, and then started me on the IV infusions.
In August 2017, I was started on weekly Methotrexate injections in conjunction with my infliximab infusions to try to get my symptoms under control. The nausea that drug causes is awful! I was taken off that due to my adverse reaction and another plan had to be formed. Back to the drawing board…
After I was taken off the methotrexate, my consultant upped my infusions to 6 weekly, where as before I was having them 8 weekly. That’s as far as my treatment has come, and I still don’t feel I am any better off for it.
Next steps; if there are any left…
My consultant and I are currently in talks about changing my treatment because we don’t feel it’s working well enough. It has started to make me feel worse than i did before having it and my symptoms remain the same as if no treatment was given at all. Unfortunately, there isn’t an endless list of treatment for Crohns, the treatment I’m on normally works for severe cases so I am told, but it isnt working for me. He has suggested we could try clinical trials with a new drug, but it’s highly unlikely it will work.
I have a review coming up in March 2018, to see if my body has reacted well with the Infliximab. If not, I could well be going under the knife. Either for a resection or a colostomy. Whichever it is, as long as my symptoms stop, I don’t care.
Who knows what the future holds?
For now, I will sit in this bleak, white room. In my blue hospital recliner chair, hooked up to a machine whilst the drugs flow into me. Letting my endless words spill out onto my blog, with the occasional whirring noise from the blood pressure machine as it takes my reading.
What a life.