Hello my fellow IBD warriors.
I was wondering if i could ask for some friendly advise.
I have been dealing with crohns disease for the past 9 years. 5 years ago I started taking azathioprine. I had been in a constant flare since being diagnosed. After complaining how this drug made me feel horrid. My GP told me it was the stomach flu. I didn't believe her so asked to have my bloods checked. Turned out it was the on set of acute pancreatitis.
I was taken off of azathioprine and put on humira. Unfortunately humira didn't even touch the sides of my crohns disease. In fact I was loosing more blood then I have ever done. And then my foot turned purple. I was then removed from humira.
Two years later, and hundreds of steroid tablets later, we discussed being placed on infliximab. The side effects truly scared the crap of me. But my IBD nurse sold the idea of infliximab being a wonder drug.
One first infusion went perfectly. As did my second. And 3rd. I had a few side effects. Being tired and a few headaches. But nothing I couldn't put up with. Although my 4th infusion went incredibly wrong. A trainee nurse forgot to clip my cannula, and I ended up bleeding all over the floor. Thus I was sick everywhere and passing out. I was given the choice to reschedule. But went through with it. I then started to notice I was feeling very sick. Flu like symptoms, fever, blocked nose, very bad cough. I thought it would be best if i rescheduled my infusion until I felt better. I tried to call my hospital no answer. It went on like this for a week. At this time, my flu like symptoms were extremely intense. I couldn't sleep. I was delirious from the fever. Anything I ate would come up within 5 minutes. I tried to call my IBD nurse. No response. I ended up calling my GP as i couldnt leave the house and he prescriped a course of steroids. This went on for a month. I lost 2 stone. Looking back I should of gone to A&E but im rather stubborn.
I felt let down by my hospital and IBD nurse. Turns out they had moved the clinic over to another hospital without notifying me.
After the month of hell. I started feeling better. I wasn't loosing blood and I was keep food down. But i wasn't gaining any weight.
A year and a half later I saw my new IBD nurse who suggested I should go back on infliximab 9 months ago. I reluctantly agreed. I explained the last time i was on it i become very sick. But pushed me into going ahead with it.
I have just had my second dose yesterday and feeling a bit all over the place. I have been itching like mad. And it's hard to catch my breath. I was given premeds that made me sleepy. I felt like this while being in hospital and the nurses said to book an appointment with my GP.
I'm worried I'm going to have another bad reaction. And im thinking I don't want to be on this drug. I understand if i come off it again. The luckily hood of it working in the future is pretty much non existent. But im not happy.
What should I do?
I was wondering if i could ask for some friendly advise.
I have been dealing with crohns disease for the past 9 years. 5 years ago I started taking azathioprine. I had been in a constant flare since being diagnosed. After complaining how this drug made me feel horrid. My GP told me it was the stomach flu. I didn't believe her so asked to have my bloods checked. Turned out it was the on set of acute pancreatitis.
I was taken off of azathioprine and put on humira. Unfortunately humira didn't even touch the sides of my crohns disease. In fact I was loosing more blood then I have ever done. And then my foot turned purple. I was then removed from humira.
Two years later, and hundreds of steroid tablets later, we discussed being placed on infliximab. The side effects truly scared the crap of me. But my IBD nurse sold the idea of infliximab being a wonder drug.
One first infusion went perfectly. As did my second. And 3rd. I had a few side effects. Being tired and a few headaches. But nothing I couldn't put up with. Although my 4th infusion went incredibly wrong. A trainee nurse forgot to clip my cannula, and I ended up bleeding all over the floor. Thus I was sick everywhere and passing out. I was given the choice to reschedule. But went through with it. I then started to notice I was feeling very sick. Flu like symptoms, fever, blocked nose, very bad cough. I thought it would be best if i rescheduled my infusion until I felt better. I tried to call my hospital no answer. It went on like this for a week. At this time, my flu like symptoms were extremely intense. I couldn't sleep. I was delirious from the fever. Anything I ate would come up within 5 minutes. I tried to call my IBD nurse. No response. I ended up calling my GP as i couldnt leave the house and he prescriped a course of steroids. This went on for a month. I lost 2 stone. Looking back I should of gone to A&E but im rather stubborn.
I felt let down by my hospital and IBD nurse. Turns out they had moved the clinic over to another hospital without notifying me.
After the month of hell. I started feeling better. I wasn't loosing blood and I was keep food down. But i wasn't gaining any weight.
A year and a half later I saw my new IBD nurse who suggested I should go back on infliximab 9 months ago. I reluctantly agreed. I explained the last time i was on it i become very sick. But pushed me into going ahead with it.
I have just had my second dose yesterday and feeling a bit all over the place. I have been itching like mad. And it's hard to catch my breath. I was given premeds that made me sleepy. I felt like this while being in hospital and the nurses said to book an appointment with my GP.
I'm worried I'm going to have another bad reaction. And im thinking I don't want to be on this drug. I understand if i come off it again. The luckily hood of it working in the future is pretty much non existent. But im not happy.
What should I do?
