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Imuran Side Effects?? Help!

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Posted 10/15/2010 1:46 AM (GMT 0)
Hi,

I've been very ill for about 1 week now. I've been on Imuran for 3 weeks.

A week ago I came down with flu like symptoms. Last Saturday I went to the ER with extremely painful sore throat (couldn't swallow or talk, like pins/needles in mouth). This happened 3 days in a row (sore throat in evening, sick all day). It would start with a slight sore throat and then EXTREME body aches--I can't get off the couch. I was taking Imuran all three days.

On Monday I was so incredibly ill that I had to be driven to the doctor's. They told me viral infections were going around sent me home, but not before the PCP suggested I stop the Imuran and talk to my Gi. My GI disagreed that it was the Imuran, and urged me to continue it. He ordered blood tests, even though my tests 1 week before were normal. Those have not come back yet.

I did not take the Imuran for 3 days and did not have my sore throat episodes in the evening. I was finally well enough to return to campus today. I took Imuran again this afternoon, and this evening I am VERY ill, can't get off couch, sore throat, very very flu like. This suggests to me there is a connection.

Has anyone else experienced some similar side effects with Imuran?
Posted 10/15/2010 11:34 AM (GMT 0)
Yes, I ended up in the emergency room once, then was taken off of it for three days because they thought I might just have the stomach flu. When I went back on (like you did), I got even more violently ill. I was admitted into the hospital and never took it again. He started me out on a very high dosage and we think that's what caused such an adverse reaction. I am now on a much lower dose of 6mp and it is working. However, it is affecting my liver and making me very tired and fatigued so I am going off it in 5 weeks, then 6 weeks after that am getting surgery.

Yours sounds like an allergic reaction. Imuran helps a lot of people, but a lot can't tolerate it. Good luck and let us know how you are doing.
Posted 10/15/2010 11:34 AM (GMT 0)
I'm sorry you are going thru this. Yes, it seems that you may be having adverse reactions to the Imuran. I can't relate to what you are going thru but I thought I would respond so we can bump this thread up for others to see.
Posted 10/15/2010 3:57 PM (GMT 0)
Thank you!

Disneynut--what dosage are you on? I'm on 100mg which I thought was the lowest dosage that could be effective.
Posted 10/15/2010 4:26 PM (GMT 0)
I don't think what you're experiencing is side effects, per se, but it sounds as if you definitely have some sort of infection, & the Imuran is preventing your body from fighting it. I would definitely drop the Imuran until you feel better. Although, it takes a few months for Imuran to build up in your body, so you probably have very little of the actual drug in your blood right now. Could be a coincidence too!

Posted 10/17/2010 5:08 AM (GMT 0)
Just an update--two days off Imuran and feel GREAT. Further convinced it's the medication. Meanwhile, my UC (or Crohn's...who knows) has been getting worse over the past weeks--lots of blood. Fingers crossed the Humira can keep it under control.
Posted 10/18/2010 5:25 PM (GMT 0)
Another question!!

Has anyone experienced a loss of taste on Imuran?

Since being ill, I blamed the lack of taste on whatever mysterious virus I had, but it has still not returned even though I feel completely recovered. Unless it's SUPER sweet or SUPER salty I can't really taste anything, and nothing tastes very good except on those extremes. Needless to say it's causing me to eat rather poorly...
Posted 10/18/2010 5:25 PM (GMT 0)
Another question!!

Has anyone experienced a loss of taste on Imuran?

Since being ill, I blamed the lack of taste on whatever mysterious virus I had, but it has still not returned even though I feel completely recovered. Unless it's SUPER sweet or SUPER salty I can't really taste anything, and nothing tastes very good except on those extremes. Needless to say it's causing me to eat rather poorly...
Posted 11/9/2010 8:42 PM (GMT 0)
When I first went on Imuran 7 years ago, I had loss of appetite, but was also on prednisone, so I think it evened out my hunger.

Recently, my rheumatologist refused to refill my Imuran prescription because there was miscommunication about an appointment date that I ended up missing. She continues refuse to refill until I am in her office, even though I have resked the appointment. I have been off of the med for 2 weeks now and slowly feel myself slipping into a flare-up. I continue to call the desk respectfully requesting a few pills until I am seen or at least an explanation of the risk of being off the meds for as long as I have---but nothing. I get a rude nurse practitioner saying this is my fault and that the doctor feels it would be harmful to refill such a dangerous medicine. ?!! I've been on the same steady dose for quite sometime?! Why on earth would she stop it immediately?--Over some office procedure and missed appt? She is clearly causing me harm rather than helping me. I haven't had a flare-up in almost a year until now and trying to function at work has been so difficult. Why would a doctor put me at such risk?

Am I wrong to think this is bad medical practice? Does anyone know the risk of coming off of Imuran/Azathioprine cold rather than gradually, besides a flare-up as I have learned?

Thanks for reading.

Frustrated in Seattle
29-year-old female
Lupus sufferer 10 years
Prednisone, Azathioprine, Hydroxychloroquine
Posted 11/10/2010 3:42 AM (GMT 0)
in may 09 i was soo sick...I had been on immuran for about a month. I suddenly developed 104 degree fevers, stiff neck etc. went to the doctors 3 days in a row (tested for swine flu 2 times and treated with tamiflu even though it was negative) and on the last appt they sent me to the hospital for a spinal tap. That came back ok but they admitted me to the hospital because my potassium was really low and my bp would not stay up. One dr got the idea to take me off imuran and within 24 hours my fevers and neck pain and headaches were gone. My GI didn't see me in the hospital because he doesn't have rights to the hospital I was at. I saw him the day after I was dicharged and it was determined that I had a serum sickness reaction and he told me to never take that again because it would most likely happen again.

In my opinion refuse to take it if you feel that you are ill on it.
Posted 11/10/2010 2:18 PM (GMT 0)
Veeves, yes it seems to be in bad medical taste for a doc to deny you a med that has worked AND if you already have an appointment scheduled. Can you see your primary doc to get this script until you see your rheumy? If so, see if he/she is willing to do that and in the meantime, try to find another rheumy.
Posted 11/11/2010 7:22 PM (GMT 0)
Thanks so much for the reply, Red_34. Your forum is fantastic.

I was able to get in to see the less popular rhuematologist in the practice who, although didn't want to pose any negativity on his resident colleague, made it very clear I was in the right to seek care elsewhere and could only apologize for the actions of the other doctor. {{sigh}} As I get my labs squared away and alter med dosage to ease my flare-up, I now begin the trying task of searching for a new rheumy. Thanks so much for the feedback. It's difficult when you trust your medical professionals with not only your health, but well-being.

Thanks, everyone for sharing. Hope you all are feeling well today!

Veeves
Posted 5/29/2011 6:26 PM (GMT 0)
Veeves,

Your doctor, by punishing you for missing an appointment and filling Imuran, is committing a crime called "Patient Abandonment".  Threaten that and you will get some servious.  I am trying to get off Imuran, I am 10 weeks into Ovamed

Posted 5/30/2011 2:39 PM (GMT 0)
mkl11,

I see your taking Ferrous Sulfate. This is very harsh on the digestive system. For iron supplements it was recommended for me to take 25mg of Carbonyl Iron 2x daily. Its gentler on the stomach. Sundown Naturals makes some called Perfect Iron.

You can also try Megafoods Blood Builder made from natural ingredients. You can find this at Whole Foods.
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