Tuesday was my medication review with my GI at Good Hope.
I’ve been asking about my review for a good 3 months to date, and finally, I’ve been given an answer.
After all the hoop jumping, all the tests and bloods and scans, finally, FINALLY, I’m off the Humira.
I had a speech all planned and all the evidence I’ve accumulated in the last couple weeks, only for my doctor to suggest, after having looked and explained my blood results and historiography of my colonoscopy, we stop my medication. I hadn’t expected this. A little grin appeared on my face and I nodded. My bloods showed a low CRP level (three, first time it’s been in the boundaries – 1 to 10 – for a couple weeks) no anaemia and no real cause for concern. My polyps came back without issues and generally, I’ve been going good for 6 months now; the Humira wasn’t really needed.
What was needed is a new drug. It had been mentioned before; they had at one point suggested it alongside Humira injections, but now, I shall just take this. It’s a 6mp – Purenthol or Mercatopurine; a sister drug to Azathioprine. Its means going back to weekly blood tests and understanding the risks like when I was on Aza.
For me, Aza didn’t work. It was October 2010 and I was sick. I was in a flare and the Pentasa wasn’t doing anything. I’d just been told to start taking Aza before the dose got double and I fell very sick. I was rushed into A&E with all sorts of pain and mostly my consultant blamed the Aza. I got C Diff again and developed Shingles. I was sick as a dog. Little did I know, or have been only told recently, the Aza wasn’t the problem, it was the lingering C Diff of the previous month. It hadn’t gone away with all the antibiotics they had given me. Oh, right! Nice to know! So, this time around, I shall be looked after. Hm.
I get the feeling that my remission or whatever maintenance of these Crohn’s symptoms I have, mean I will be alone in this one. I am nothing like I was before; I am not sick like I was, I’m not as naive and simple as I was, and I sure as hell aren’t as inexperienced as I was. As time had gone on and it’s passed at an alarming rate, I find myself fighting for a different cause. I used to fight for the chance to be normal once more. I had to give up that ghost, that dream, many months ago. I fight now for some normality. Sounds similar, but it feels completely different to me. I only wanted to be back to normal, knowing that deep down inside, I could never return, that door was closed, and I had to face who I was and what I was without looking back. That is hard to do. Now, I am finding that I want to minimise the damage all these medications can / have / will do my body.
This sounds very broad, but I’ll go specific: I want to maintain a good and healthy body as much as my Crohn’s will let me. I am currently 24 and experiencing awful joint pain. It could be Arthritis in its early stages. It could just be muscle weakness and I could be experiencing heightened levels of acute pain because my pain has already been masked for some time by other medication. I’ve been three weeks, now to be four weeks, without a new Humira injection running around my body, helping the hurt I feel. I am left exposed. Yes, I’ve asked for this, to remove the Humira from my body to a lower dose of a different level of medication. I accept that. I don’t enjoy the raw feeling I feel.
What I mean, in reality, is that, how is this 6mp going to change me?
Will it make me better? I hope so, and I bet the health care professional who know my case, hope so too, when prescribing this. My GI sounded confident on Tuesday that this will be best for me NOW. But is he really that confident? Does he hope, like I do, that this change in medications doesn’t result in an admission? A flare up? A problem?
I sat here only weeks ago bitching and moaning about Humira and pain. Now I sit here and explain the longing I feel inside about the strength of this medication. Something I can’ quite admit to anyone else in my actual life. Only here. I hope that it does work. That I’ve gotten far enough into ‘recovery’ that Purenthol does its job without too much hassle.
Oh, and that my joints don’t actually have Arthritis in them. That would highly amusing in a sad and angry way.