I wanted to share my story as a cautionary tale. I am on Humira but have developed antibodies to it so my GI wanted to try azathioprine (because my last GI skipped that step and went straight to the "big guns" from Pentasa after that stopped working). I did 10 days of azathioprine at 50 mg and felt okay. However, after 3 days on the increased dose of 150 mg, I started to feel bad.
I'm not sure what was coincidental and what was related to the aza but I'm now sure some of it was directly linked. Initially, I was having some chest congestion, which I've read can be a side effect but also could just be coincidental. Then I started running a low-grade fever and was having abdominal discomfort and early satiety. On Thanksgiving I was able to eat but felt full very fast. Same thing happened the next day after every time I tried to eat. Low-grade fever continued. The following night, my fever rose to 102 F, I started having violent chills, abdominal pain increased greatly and I started throwing up. (The pain was in the lower right quadrant so I knew it was possible this could be appendicitis or it could be a Crohn's flare because that was how I presented initially.) I went to the ER and was briefly admitted to the hospital but the docs there didn't really know what to do with me. CT scan showed normal appendix and nothing else remarkable. They said my bloodwork was normal. They assumed it was a Crohn's flare, as did I, because the pain was just in the lower right quadrant (I have terminal ileitis).
The abdominal pain had decreased and my fever had gone down in the hospital so they released me. I was put on a 6 week prednisone taper, and 500 mg of ciprofloxacin and metronidazole. I began taking all that on Sunday when I got home from the hospital, along with the aza in the evenings as I had been doing. But the next day the fever came back. Abdominal pain was still present but lessened. I continued to take the aza as instructed. Yesterday morning, once again, I awoke at about 4:30 am with another fever, this one higher, and more abdominal pain, this time higher up. I went back for repeat bloodwork and it was mostly benign, save for a very slight elevation in lipase, which my GI said he wouldn't generally consider an indicator of aza-induced pancreatitis. But it did give him pause and he told me to stop the aza just in case. So I didn't take it last night. I slept through the night and woke today with no fever. Abdominal pain is gone, though I do still feel somewhat bloated.
Now I'm reading other stories similar to mine and learning that fever, chills, nausea, vomiting, early satiety can all be side effects of aza, and can exist outside of aza-induced pancreatitis. I'm really frustrated that a) I didn't receive sufficient warning to watch for these symptoms (I didn't get to see my GI the day I was put on aza, just a resident) and b) it's back to the drawing board for a med plan. I'm also left wondering if any of this was actually Crohn's related or just azathioprine related.
I've read at least one other story on here that was nearly identical to mine. Has anyone else experienced a similar reaction to azathioprine?
I'm not sure what was coincidental and what was related to the aza but I'm now sure some of it was directly linked. Initially, I was having some chest congestion, which I've read can be a side effect but also could just be coincidental. Then I started running a low-grade fever and was having abdominal discomfort and early satiety. On Thanksgiving I was able to eat but felt full very fast. Same thing happened the next day after every time I tried to eat. Low-grade fever continued. The following night, my fever rose to 102 F, I started having violent chills, abdominal pain increased greatly and I started throwing up. (The pain was in the lower right quadrant so I knew it was possible this could be appendicitis or it could be a Crohn's flare because that was how I presented initially.) I went to the ER and was briefly admitted to the hospital but the docs there didn't really know what to do with me. CT scan showed normal appendix and nothing else remarkable. They said my bloodwork was normal. They assumed it was a Crohn's flare, as did I, because the pain was just in the lower right quadrant (I have terminal ileitis).
The abdominal pain had decreased and my fever had gone down in the hospital so they released me. I was put on a 6 week prednisone taper, and 500 mg of ciprofloxacin and metronidazole. I began taking all that on Sunday when I got home from the hospital, along with the aza in the evenings as I had been doing. But the next day the fever came back. Abdominal pain was still present but lessened. I continued to take the aza as instructed. Yesterday morning, once again, I awoke at about 4:30 am with another fever, this one higher, and more abdominal pain, this time higher up. I went back for repeat bloodwork and it was mostly benign, save for a very slight elevation in lipase, which my GI said he wouldn't generally consider an indicator of aza-induced pancreatitis. But it did give him pause and he told me to stop the aza just in case. So I didn't take it last night. I slept through the night and woke today with no fever. Abdominal pain is gone, though I do still feel somewhat bloated.
Now I'm reading other stories similar to mine and learning that fever, chills, nausea, vomiting, early satiety can all be side effects of aza, and can exist outside of aza-induced pancreatitis. I'm really frustrated that a) I didn't receive sufficient warning to watch for these symptoms (I didn't get to see my GI the day I was put on aza, just a resident) and b) it's back to the drawing board for a med plan. I'm also left wondering if any of this was actually Crohn's related or just azathioprine related.
I've read at least one other story on here that was nearly identical to mine. Has anyone else experienced a similar reaction to azathioprine?
I'm really scared something really bad is happening to me.