Tag: medication

Only three more days until I finish the predinsolone. I’m still not sure how I feel about it; on the plus side, I’ll be off the steroids so no more horrible pred-side effects. On the down side, I don’t want a repeat of what happened last time I came off them and end up in hospital because of a flare-up. I don’t think a relapse is likely as the only symptom I’ve had recently is stomach pain, but I can’t help but think things may get worse once I come off them completely. I’ve got my appointment with my GI on Monday but it’s only a follow-up for the mercaptopurine. I’ll be sure to mention any increase in symptoms as well as my height resting heart rate to him. I don’t think he can do much about my heart rate but ti’s probably still worth mentioning.

Last week!

Of being on steroids and I think I’m ok. I did have a bit of stomach pain earlier but that seems to have settled now. The need for the bathroom is a little worse than it has been but nothing dramatic has happened yet. I’m still a little anxious about stopping next week but I think the mercaptopurine should be enough to keep me mostly in remission. I’m seeing my GI this Monday so I’ll be able to express any concerns then as I’ll have a better idea of what it’ll be like without the prednisolone.

I’m trying to eat as normally as I can, sticking to mostly gluten-free and only eating what I can instead of trying to force myself to eat in order to finish a meal/meet calorie goals. So far, I’ve only had two days in the last week where I haven’t reached my calorie goal but also a couple where I’ve gone over so it sort of balances out.

While on the subject of food, I got my Rule of Crumb delivery yesterday and I’ve already tried the breaded chicken. To say it was good would be an understatement; I will definitely be ordering from them again. I haven’t tried the fish, bread or muffins yet but I will, hopefully soon, and report back. Thank you to @glutenfreecuppatea for posting about it and leading me to investigate.

This week has been weird. I’m half way through my sixth week of prednisolone, taking 10mg per day, and I’m getting a dull pain in my left side which I usually associate with a flare up. Only, everything else symptom-wise is fine. The pain isn’t too bad, I’m not needing pain killers, but I am noticing it more.

It doesn’t seem to matter what I eat; I get the pain and a need to go to the bathroom shortly after each meal. I only had soup for lunch but we were a little naughty and had Chinese for dinner, which has only ever made me bloat in the past.

Ah well, hopefully, next week will be better. I go down to 5mg of prednisolone per day on Wednesday but provided the mercaptopurine is doing what it’s meant to, I shouldn’t have any/too many issues. I’ve got a follow-up appointment with my GI at the hospital in a couple of weeks so I can always discuss things with him. I am hoping to have spoken to my GP about my high heart rate by then but we’ll see. I just hope I can get an appointment with her soon.

Two weeks left!

So, I’m only taking 10mg of prednisolone now and I go down to 5mg next week before stopping entirely. I’m both happy and nervous about this; happy because yay, no more pred-face or weird hunger, but nervous because last time I came off them I ended up in hospital for a week. I know the mercaptopurine and the infliximab infusions are meant to essentially “take over” from the steroids once I come off them, but I can’t help but feel like they won’t be enough. I don’t want to go back on the prednisolone if I can help it but I don’t want to end up flaring again. I’m already getting a pain in my left side and when I need the bathroom, it’s kind of urgent. Also, my gut’s been quite sensitive to a lot of foods recently so I don’t really know what to do.

Just enjoyed a (mostly) gluten-free dinner of stir-fried sweet and sour chicken, homemade fried chips and chopped bacon, with Yeo Rhubarb and Custard yogurt for after. I thoroughly enjoyed it (as did the wonderful fiancee) and even though the sauce had gluten in it, I haven’t bloated!

I’m almost ready for trip to Lincoln tomorrow; I’ve made myself gluten-free pasta with cream cheese and chopped bacon to eat on the train, and I’m bringing some gluten-free jam tarts and rice cakes to snack on if I need to take meds on the go.

Speaking of meds, I’ve got myself a week pill pot with four sections per day, so I can put all the pills I’ll need during my stay in one place without having to bring loads of boxes and bottles with me. I got it from Amazon so if anyone needs one, I’ll post a link later.