Share Facebook
Crohn's Disease Forum » Treatment » Imuran/Azathioprine/6-MP » Be very wary of side effects when starting azathioprine/increasing dosage!!!


12-04-2013, 02:50 PM   #1
southernish
 
southernish's Avatar
 
Join Date: Mar 2013
Location: Chicago, Illinois
Be very wary of side effects when starting azathioprine/increasing dosage!!!

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?
12-04-2013, 04:04 PM   #2
KayleighMeek
Forum Monitor
 
KayleighMeek's Avatar
 
Join Date: Dec 2010
Location: Southampton, United Kingdom

My Support Groups:
I had pancreatitis from aza and 6mp, with aza I thought it was bad indigestion to start with and just put it off I went home from work as it was bad but within a couple of hours I was non stop vomiting and in a lot of pain I was admitted to hospital for a week. I then tied 6mp I took one dose and again that evening the pain started but this time a lot worse we had to call an ambulance as I couldn't move and they had to give me gas and air to get me out of bed another week in hospital from pancreatitis. Some people just aren't able to metabolise aza or 6mp I am one of them it's only a small minority of people who have severe reactions we are the unlucky ones.
Try not to let this experience deter you I'm sure you will find something that will work there are lots of options now. Hope you feel better soon.
__________________
Current meds
Cimzia
Methotrexate

Previous meds
Pentasa, Aza, 6mp, Remicade, Humira and Sulfasalazine
12-04-2013, 04:08 PM   #3
southernish
 
southernish's Avatar
 
Join Date: Mar 2013
Location: Chicago, Illinois
I had pancreatitis from aza and 6mp, with aza I thought it was bad indigestion to start with and just put it off I went home from work as it was bad but within a couple of hours I was non stop vomiting and in a lot of pain I was admitted to hospital for a week. I then tied 6mp I took one dose and again that evening the pain started but this time a lot worse we had to call an ambulance as I couldn't move and they had to give me gas and air to get me out of bed another week in hospital from pancreatitis. Some people just aren't able to metabolise aza or 6mp I am one of them it's only a small minority of people who have severe reactions we are the unlucky ones.
Try not to let this experience deter you I'm sure you will find something that will work there are lots of options now. Hope you feel better soon.
Yikes! That sounds awful! My case was weird because it wasn't outright pancreatitis so no one immediately thought to pull me off the aza. But it seems obvious to me now that's what it was. I'm feeling markedly better since stopping the aza. Since Humira is no longer an option for me, it's looking like either Remicade or Cimzia, though I'm also looking into getting a prescription for medical marijuana as it was just legalized here.
12-04-2013, 04:15 PM   #4
KayleighMeek
Forum Monitor
 
KayleighMeek's Avatar
 
Join Date: Dec 2010
Location: Southampton, United Kingdom

My Support Groups:
It was pretty bad but it was a couple of years ago now and they gave me a lot of morphine so things are hazy lol.
I'm glad you are still positive and keeping an open mind about the choices you have sometimes it can be hard to not let things get to you.
I am on cimzia at the moment it took a while to get working but it seems to be doing something now and it's helping.
12-13-2013, 09:37 PM   #5
blackli
 
Join Date: Nov 2013
Location: Burlington Ontario

My Support Groups:
I've had pancreatitis about 6 times now, all caused by meds. Aza, Flagyl, Asacol..... The med that seems to work for me is Methotrexate. For some reason my pancreas is fine when I take it. Had some other nasty side effects though, but talk to your doctor about it.
12-13-2013, 09:43 PM   #6
southernish
 
southernish's Avatar
 
Join Date: Mar 2013
Location: Chicago, Illinois
I've had pancreatitis about 6 times now, all caused by meds. Aza, Flagyl, Asacol..... The med that seems to work for me is Methotrexate. For some reason my pancreas is fine when I take it. Had some other nasty side effects though, but talk to your doctor about it.
Ugh SIX?! That's awful. My sister was on methotrexate at one point (for RA). It would be good to know if she had any bad reactions to it. Thanks for the recommendation. I've got a follow-up next week.
12-13-2013, 09:53 PM   #7
blackli
 
Join Date: Nov 2013
Location: Burlington Ontario

My Support Groups:
Yes 6-7 times, but over a long span (probably 12 years). The drug is hard on your liver so they check it regularly with blood work. The other side effects aren't horrid, bad headaches and some nausea for about 24 hours after the weekly injection. They lessen as you adjust to the med. I've just gone back on methotrexate recently after 2 flares in the last year. I was lucky enough to enjoy a 5 year remission, hoping to repeat that soon. best of luck to you!
12-13-2013, 10:54 PM   #8
Mike58
 
Mike58's Avatar
Southernish,
Thanks for posting your experience with aza. After reading your post, it struck me that I started to have similar reactions when my GI doc started me on 150 mg of aza per day. I am also on Remicade, prednisone, and a host of other drugs. I too get nausea and a full feeling after I eat anything. I came down with a lung infection a couple of weeks ago after being on aza for a month.
I still have pain in my lwr rt abdomen as well as the left side which I've had since day 1 of my first flare 14 months ago. I still have not reached a remission.
Best of luck with your daily struggle. The post really help me understand the boat we all share.
__________________
Crohn's DX October 2012. Ileum and small bowel resection August 2013. On Remicade, Methotrexate, Percocet, Lipitor, Insulin (type 2 diabetes), Metformin, Hypertension meds.
12-14-2013, 12:00 AM   #9
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I've had pancreatitis about 6 times now, all caused by meds. Aza, Flagyl, Asacol..... The med that seems to work for me is Methotrexate. For some reason my pancreas is fine when I take it. Had some other nasty side effects though, but talk to your doctor about it.
I had pancreatitis three years ago but it was caused by something in the TPN formula. I am better now. I had to go to the emergency room. My resection was moved up a week. My best to all.

2
__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
12-30-2013, 01:52 PM   #10
HannahMcEndie
 
Join Date: Dec 2013
Location: Iowa
I have been recently diagnosed with Crohn's in September and I started off with 150 mgs of aza and 40 mgs of Prednisone, but I have since tapered off of the Prednisone. With recent bloodwork, my doctor found that my aza levels were too low so now I'm on 200 mgs. When I first took the aza, I was extremely nauseated all the time. I couldn't make it through full days of school and had to take nausea medication, it eventually went away, but when I upped my dose it came back, and has gone away. Somewhat, though. I sometimes still get nauseated. But after reading these posts from above, people say to get really full after eating very little, which I didn't know was a side effect, but it makes perfect sense to me now because I used to be a very big eater, I used to love food and now it's pretty much one of my worst enemies. It makes sense now that since taking aza I get so full so fast. Also, I have not gotten into remission for six months now and I'm starting to question if aza is doing anything good for me or anything at all besides lowering my immune system...
12-30-2013, 02:06 PM   #11
KayleighMeek
Forum Monitor
 
KayleighMeek's Avatar
 
Join Date: Dec 2010
Location: Southampton, United Kingdom

My Support Groups:
Active crohns could also give you that full feeling I get it when I am flaring it only takes a few bites and I can't have anymore. If you have any problems it's always best to bring it up with the dr to find out what is causing the problem
01-21-2014, 08:31 AM   #12
Juuh
 
Join Date: Dec 2013
Location: Arctic Circle, Finland

My Support Groups:
I remember feeling mild nausea and fullness after eating when I started aza around 2000. I was on prednisone at that time but kicked it completely pretty soon after starting aza. No feelings besides that, only thing that my Doctor noticed was low white bloodcell count after taking aza from 100 to 150mg. Few adjustments here and there over the years and I take 125mg now. Never had other common problems like loosing hair or being sensitive to sun. No extra colds either. Persistent rash, dermititis and whatnot possibly caused by aza but hey, I can live with that!

Just make sure you get to doctor and full bloodwork if flu-like symptoms or anything special occurs, especially in the early stages or when trying higher dosage for Aza! It might be lymphocytes droppin too low!
01-21-2014, 01:39 PM   #13
ce1210
Senior Member
 
ce1210's Avatar
 
Join Date: Jul 2013
Location: Chattanooga, Tennessee

My Support Groups:
Yikes! That sounds awful! My case was weird because it wasn't outright pancreatitis so no one immediately thought to pull me off the aza. But it seems obvious to me now that's what it was. I'm feeling markedly better since stopping the aza. Since Humira is no longer an option for me, it's looking like either Remicade or Cimzia, though I'm also looking into getting a prescription for medical marijuana as it was just legalized here.
medical marijuana is amazing...please do try it. Since becoming a regular medical user, I am off all other meds besides LDN and prilosec. MMJ has kept me out of the ER on a few ocassions and for me seems to work better than anything the doc can give me.
02-08-2014, 09:41 AM   #14
strawberrys78
Senior Member
 
Join Date: May 2013
Location: Canada

My Support Groups:
I'm taking imuran right now.. I only took it for 8 days, and Thursday night (7 days after taking it) I started getting wicked chills. I couldn't stop shaking, my teeth were chattering so bad, then I developed a high fever, and I was blood red in the face. I just felt bad. Everything looked really cloudy, I was disoriented. I went to the ER, they ran blood tests, x rays, and an ekg. My heart rate was at 130!! They gave me tylenol and basically sent me home, because they didn't know what's causing it. They said everything in my tests came back normal and if I develop any other symptoms to come back. So Friday morning, I took my imuran like normal. I called my GI and told her everything, and she told me that the imuran could be causing the symptoms. She told me to stop taking it for one week, and then start taking it again to see if I get the same symptoms. So today is Saturday, I didn't take the imuran today. I've been taking 2 extra strength tylenol every 4 hours since Thursday night, and I still have a fever!! The second the tylenol wears off, I start sweating and get a fever again. I feel like crap. I'm kinda scared. I don't know what to do. I'm pretty sure I'm going to call my GI and tell her there's no way I'll take the imuran again, because I know that the imuran is doing this to me. And I'm also on Prednisone (tapered down to 30 mg per day) from a partial obstruction I had about a month ago. I've read online things about people having septic shock on imuran and they've had similar symptoms as me. Anyone have any advice? I wish this fever would just go away and I'd feel better I'm really scared something really bad is happening to me.
__________________
Diagnosed with Crohn's Disease May 2013 after a 2 yr battle. Colonoscopy Dec 2012/MRI Apr 2013. Partial Obstruction discovered Jan 2014, 6 day hospital stay. 30 CM of small/a couple of inches of large intestine removed in laparascopic surgery Sept 10/14 due to not responding to medication.

Currently taking:
Remicade

Previously taken:
Asacol
Pentasa (hair loss)
Cipro (allergy)
Morphine
Flagyl
Imuran (Reaction)
Prednisone
Ranitidine
Atasol 30
Tramacet
Toradol
02-08-2014, 02:14 PM   #15
Juuh
 
Join Date: Dec 2013
Location: Arctic Circle, Finland

My Support Groups:
I have had high fevers and chills while taking Aza (Imuran) and always had bloodwork to check lymphocytes (white blood cells) because that count tells you if the fever is caused by Azathioprine. If its not dangerously low then the fever should not be from Aza. They have not been too low so my doc have told me to keep on eating my meds and having fever and everytime it has gone away. High fever caused by aza is one symptom of lymphocytopenia and it happens because your lymphocytes get too low, and that should be clearly visible in basic blood test.
But as always with this crappy disease and heavy meds that are used to treat it, everything is possible.
Reply

Crohn's Disease Forum » Treatment » Imuran/Azathioprine/6-MP » Be very wary of side effects when starting azathioprine/increasing dosage!!!
Thread Tools


All times are GMT -5. The time now is 12:44 AM.
Copyright 2006-2017 Crohnsforum.com