I am now a year into my journey with Crohns and while I’m no expert I’ve taken my fair share of meds for the disease and wanted to share my experience with the drugs that I have been on and that I am currently on so far.
The first thing I was given by Consultant was Prednisolone (steroids) – they use this as an aggressive treatment to put out flares
Now I’m not going to sugar coat it, I hated these things, the little white pills, you usually taper down from these over a course of weeks meaning for example you take 8 for 2 weeks then 7 for a week, then 6 and so on.
Now don’t get me wrong they work for some people, but for me the side effects were rotten. Hello Insomnia, I thought I knew what that was before Pred but boy I was wrong. I couldn’t sleep, I was also getting pretty angry for no reason. It made me ravenous and was always wanting to eat (which can be a good thing if you’ve lost loads of weight) and a lovely side affect called Moon face. Your face goes a a bit round.
I was then started on Octasa with them which was 6 tablets a day split into 2 doses
These didn’t do much – only thing I did notice from these was that sometimes the shell was pooped out which was a bit of a surprise, so if you take these and ever get that you are still absorbing the pill its just the coating.
I went back to my consultant as I couldn’t cope with not sleeping from Pred so they changed them to another steroid called Budesonide
Unfortunately for me none of these drugs worked to get my symptoms under control and I was put on Azathioprine which is an immunosuppressive drug – its job is to dampen down the immune system and reduce inflammation.
At the start I had blood tests every week for 4 weeks and now my bloods are done every 3 months while on Aza, to check that liver function and white blood cell count is ok.
It can take a few attempts for the dosage to be right for Aza, mine was lowered by my IBD after a routine check. Side effects that I can note with this, Luminous yellow pee, yup you read that right. My hair is also very thin but fortunately I only loses strands and not massive clumps.
As Azathioprine was not enough to slow down my symptoms I also take Humira – this is known as a biologic and comes in a pen that I inject every 2 weeks.
Before you get put on this drug they do check you latent TB and ask if you have had chickenpox – I had a chest xray at the hospital and was sent home with a pack about the drug before I said yes.
I got a delivery of my injection pens and a nurse visit was booked for a home appointment to show me how to inject myself. It was 4 injections for the first go, then 2 the week after and now I take 1 injection every 2 weeks.
Humira has 100% improved my symptoms and hope it continues to for the forseeable future. the only side effect I can note from this one is something they call the Humira Hangover. It can give you a banging headache and some flu like symptoms. I have only had this once so far. The injections are easy and painless and gives me the freedom to take the medication in my own home.
I think its important to note how medication is working for you with health care professionals and to discuss any side effects with your team so the right treatment can be found. Everyone is different, and as with all medications you will see a list as long as your arm of all possible side effects, they are worth noting but not so much as to overly worry. For me the benefits have so far outwayed any side effects I may have had.
And to end on this post here is a little video of my humira injection.