My nightmare with Imuran (although didn't know it was the imuran causing it)

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lovemyboys09
Regular Member


Date Joined Apr 2009
Total Posts : 249
   Posted 6/1/2009 2:09 PM (GMT -6)   
On May 29, I developed a fever and figured it was just a bug since I work at a dr office. I stayed home and by Saturday morning was feeling a little bit better. Then later that afternoon, my fever spiked and around 6 pm went up to 104.5. I ended up in the urgent care and had low potassium and they gave me IV fluid and antibiotics and did blood tests and xrays to try to find where the infection was. They even swabbed me for swine flu!! anyways....they sent me and home and told me to come back the next day for a recheck since I was so sick. By the next morning I was still runnning a fever between 102 - 104 and had flank pain and severe neck pain. I went back to the urgent care and they gave me a shot of tordol which didn't even put a dent in the pain i was having. The doc/nurse had no clue what was going on with me so they sent me to the hospital emergency room for a spinal tap!! I had a spinal tap and that came back neg for meningitis. When they were going to release me my bp went down to 80/30 and they started giving me IV fluids in hopes to bring it back up which didn't work. I ended up being admitted and my electrolytes were totally off. I had to have 3 bags IV magnesium, potassium and phosphorus. 
 
The next morning they discontinued my imuran due to my wbc dropping from 800 to 400 in less than a day. Within 12 hours my fever stopped..my electrolytes balanced out. My neck pain was treated w/ valium and oxycodone and finally is feeling better. Went to the GI dr 2 days later and they said it was called a serrum (cebrum)  (don't know what the first word was.   reaction anyone hear of this??  Now he doesn't know what to do for me as a plan for meds. so i go back in 4 weeks for a new plan.
 
This is the worst I have ever felt in my entire life.
 
Diagnosed with Crohns in October 07
Diagnosed by new dr with Ulcerative Colitis 03/09
Colonoscopy on 4/23-diagnosed with severe ulcerative proctitus
 
Meds:
12 Asacol/day
proctofoam at night
prednisone (10 mg)
Azathioprine (50 mg)
pentasa
canasa
 
Waiting to feel healthy again....
 
 
 


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 6/1/2009 2:19 PM (GMT -6)   
How scary! I'm so sorry you had to go through that. How long have you been on Imuran?
32 yr old female
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon?


lovemyboys09
Regular Member


Date Joined Apr 2009
Total Posts : 249
   Posted 6/1/2009 2:27 PM (GMT -6)   
I had been on immuran just shy of 1 month. My 2 week blood work had come back fine and my body had handled it well with the exception of making me tired. (not that big of a deal though) So its a major bummer that I can no longer take it...now I have no idea what is next.
Diagnosed with Crohns in October 07
Diagnosed by new dr with Ulcerative Colitis 03/09
Colonoscopy on 4/23-diagnosed with severe ulcerative proctitus
 
Meds:
12 Asacol/day
proctofoam at night
prednisone (10 mg)
Azathioprine (50 mg)
pentasa
canasa
 
Waiting to feel healthy again....
 
 
 


Ghena
Regular Member


Date Joined Apr 2009
Total Posts : 31
   Posted 6/1/2009 3:05 PM (GMT -6)   
Have u ever had a blood test to check ur TMPT enzyme, it is a test done through Prometheus to check how to dose the 6MP which is a metabolite of Imuran. i dont know what u mean when u say "it was serum" that causeed ur fevers. serum means blood levels. Perhaps it was due to ur white count being really low.
There are other meds to IBD besides Imuran. there is Humira, Remicade...
feel well and do not let ur blood levels go so low.
Feel well
Ghena 31 UC on SCD and meds (6mp...)

lovemyboys09
Regular Member


Date Joined Apr 2009
Total Posts : 249
   Posted 6/1/2009 5:04 PM (GMT -6)   
I had the TMPT enzyme test before I started the Imuran....the doctor said it was fine to start the Imuran because that test came back fine.

When I went back to my GI 2 days after being released from the hospital, he said there is a certain type of reaction that makes high fevers and electrolyte imbalance and I just can't remember what the first word of it is. He said that the reaction caused everything he is 90% sure because it all stopped after I quit taking it. Anyways....he said the only way to be 100% sure it is a reaction to the Imuran is to put me back on it...and of course he said there was noo way he would ever try that.

I am very nervous about humira and/or remicade
Diagnosed with Crohns in October 07
Diagnosed by new dr with Ulcerative Colitis 03/09
Colonoscopy on 4/23-diagnosed with severe ulcerative proctitus
 
Meds:
12 Asacol/day
proctofoam at night
prednisone (10 mg)
Azathioprine (50 mg)
pentasa
canasa
 
Waiting to feel healthy again....
 
 
 


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 6/1/2009 7:27 PM (GMT -6)   
I had a horrible two weeks on Imuran, was in the ER twice in that time with severe pain, nausea, it was awful. Felt like if I died I wouldn't be too bothered, at least I wouldn't feel so bad. After the Imuran failure my GI recommended Remicade. I was hesitant to start it, but really had no alternative. It was a real godsend. I'm not 100%, but a good 90-95%. At some point I'll likely have the surgery, but for now, it's not too bad.
Meesh
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

15 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 4/25/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 6/1/2009 7:30 PM (GMT -6)   
     That is really frightening.  Hope you are feeling better soon.  I've been on 6MP for over six years now.  Not really too happy about that.  My doctor put me on 75 mgm last year but my white count came back at 2.4.  He didn't seem at all concerned about that either.  Well, I sure was, so I cut the dose down to 50 mgm.  My white count in March had gone up just a tad to 2.9...not good either but I had my blood tested today and I see my GI doctor on Wednesday.  So far I haven't had any serious side effects except for that low white count.  I try to stay away from sick people.  You mentioned you work in a doctor's office.  I wouldn't be surprised that you most likely picked up some infection there.  With a low white count your system doesn't have the antibodies to fight off germs.  I don't blame you for not wanting to start remicade.  I am not a candidate for that because I was exposed to the tb virus while working in a hospital lab  back in the 60's.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


shakes3
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 6/1/2009 8:49 PM (GMT -6)   
Sorry to hear about that. Kinda scares me cause my doc wants to maybe put me on that. I would talk to your doctor about remicade. Expensive as hell but if you have good insurance might work out.
Diagnosed with moderate UC left side 2005
Salofalk 3pills x 3 times daily - No effect
2006 moderate to severe UC
Prednisone 25mg daily cycled down 5mg per week
Asacol 3pills x 2 times daily, remission achieved
2009 severe pancolitis
60mg prednisone cycled down 5mg per week
Remicade 3 infusions
3grams fish oil, 2 multivitamin, 1 Glutamine, 1 B12 and folic acid, 1 Calcium and D3, 4 Probiotic
Currently at 7.5mg prednisone,


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 6/2/2009 3:18 AM (GMT -6)   
OMG...how scary!!! it's good you were taken off the Imuran and ultimately realising it was the cause.

I have a friend who basically couldn't walk because of the extreme pain and numbness in her back/legs. Way too scary.

Hope you steadily improve.

Keep us posted.
quincy
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

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