Hey there,
I've been in a flare since January 2016 that got worse leading to a hospitalization in July 2016, where I was put on Remicade. I was on IV steroids so I wasn't really sure if it was having any effect or not. I came off the steroids fast because I have anxiety problems with oral medication atm so it was a fast taper off the IV and I found I became ill really quickly again after leaving hospital. I did Salofalk enemas nightly and a few months of me "getting by" ensued, then at the end of September 2016 I was back in hospital, back on IV steroids, and switched to Remicade double doses. I was also put on pred foam alongside the Salofalk enemas. Since then I have been on pred foam, Salofalk enemas, and since this Thursday, sulfasalazine syrup (an oral drug I can get into my body, woo!). One thing's for sure - this flare up has not gone away since January 2016. I am still flaring, and while it's been up and down (heck, the last few days have been really good in comparison to the weeks beforehand - let's just say ~2 times a day instead of ~10+, but my disease goes up and down a lot anyway to be fair), I obviously need to get this disease under control. I have *never known* if Remicade has any effect on my disease. A very recent scope showed active inflammation, moderate disease. This was not worse than September / October 2016, but it wasn't really better either.
Now, there seem to be a few options at this point - carry on Remicade as I'm doing, carry on Remicade but add methotrexate (if I can't have it orally there is the option of injections), or switch to Entyvio.
What would you do, what would you recommend I do, what are the considerations at this point? The scary thing for me, of course, is that it is a kind of irreversible decision as far as I'm aware, no matter what I do. Whilst the Remicade might not be working at all, how do I know that my disease is not absolutely ungodly awful and it's actually doing a great job at keeping it at the level it's at? On the other hand if it's not doing anything and there's all that side effects possibility and the chance of the illness getting worse ... etc etc. Methotrexate, it might help, but the side effects and to put it bluntly I am a young man and I have read some horror stories about
the combo of Remicade & methotrexate ... yes it might be really rare but still it concerns me a bit as a risk, especially if it ends up not helping the disease. But then what if it does ... Haha. What do you think?
Post Edited (~ chicken wings ~) : 3/20/2017 10:58:25 AM (GMT-6)