So this is me sitting all glorious in my Micky Mouse jumper. It was last year, and I was undergoing my (I want to say fourth?) infusion of the drug Vedolizimab. It was my third course of immunosuppressants.
Immunosuppressants are drugs that are used for all types of autoimmune diseases, they work by lowering your immune system so that it stops attacking your own body, the downside being it leaves you open to all sorts of other infections. I only really know (through my own experience) about the ones used to treat Crohns disease.
Finding a drug that manages your disease is really hard when there is no absolute cure. I know I am not alone in this. Unfortunately Vedolizimab was not the drug for me. It neither helped nor hurt, which is more than I can say for some others that I have been on.
With Crohns and Ulcerative Colitis, the severity of the disease tends to be judged on how well your body responds to treatment. The more drugs you try without results, the more severe your disease is considered. This is mostly because if the treatment isn’t working, the disease can continue to attack and spread.
If you have been recently diagnosed it is helpful to know that they do not immediately start you on the heavy-duty drugs. You will first be placed on either pentasa or asacol, perhaps alongside some sort of steroid. (I will talk about my love/hate relationships with steroids in another post!) If those don’t work, you will be moved onto the lowest immunosuppressant there is, Azathionprine, then up to Humira, then Infliximab, then Vedolizimab, then finally Ustekenamab and if that doesn’t work…well then, I’m afraid you’re onto experimental drugs.
Now, I’m not going to lie. Immunosuppressant drugs can be grueling, it’s tough. But it’s no tougher that gritting through the pain of the actual disease itself. I’m not going to list all the side-effects here, partly because not everybody experiences them and partly because if you experience any of them you’ll soon find out anyway.
If a drug reacts badly with you or doesn’t do anything at all, try not to panic. There is still a chance another drug will work. If not, you may have to start looking at other options and trust me, that’s not always the worst outcome either.
Take a deep breath, this might be your new normal now, but it won’t always be this hard and always remember you are not alone. Go online, reach out to people, ask questions even though the answers may scare you.
You are strong. You will get through this.
Be wonderful sweet things,