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Hi! Has anyone experienced terrible body aches with Imuran?

My husband started taking this medicine almost a week now for highly active crohns, after a colonoscopy and ct scan with ulcers. His specialist told him this type of medicine would be the only kind strong enough. (He was taking Asacol) prescribed by our family physician. Anyhoo, now he is telling me about his terrible body aches. He says they are even worse than when he was on No meds. Is this normal? Will they ease up? I'm really, really trying to sway him away from the BC powders, which is what he was dependant on when we had no insurance and no meds. He had quit taking them after he started treatment, until now. I HATE those things. Imuran, He is taking 250 mg once a day- thats 5-50mgs at once. He is 230 lbs. Is this a large starting dose? Oh, and his urine is neon yellow, which im thinking is normal? Any advice?
 

Catherine

Moderator
My daugher appears to have no side effects. Is he having weekly blood tests?

Sorry can't be more help, this will bump your thread.
 
Thank you. Yes he takes his first blood tests this coming Monday 11/19. Also, would it be a good idea to start him on some vitamins?
 
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Catherine

Moderator
I think David usually recommends testing Iron, B12, folate, D.

Best to have known levels before adding supplements.
 

David

Co-Founder
Location
Naples, Florida
Hi cedmonds,

How is your husband doing? Did they test him before putting him on the Imuran to see how well he would tolerate it? Has he had any blood tests since going on it?
 

hawkeye

Moderator
Staff member
Haven't had the joint pains, have had headaches for a period but not 100% sure if they were a direct relation to the Imuran
 

Kev

Senior Member
I did... I kept a diary. Incredible pain, followed in short order by a rash. It was Imuran/AZA.
Put me in the ER.. The Drs stopped the AZA... the pain went away within 2 days. The rash took almost a year. Imuran/AZA isn't a drug to be toyed with. Get it checked out ASAP!
 
I had sever body pains and nausea. I used to become violently ill within an hour of taking it. I was required to have my blood checked every 7 days which I thought was the norm if taking imuran. My specialist had me stop the imuran due to my reaction to it.
 

afidz

Super Moderator
I had awful body aches almost right away when I started Imuran. I couldn't walk or bring my hands close enough to my face to eat. I had to be admitted because I couldn't take care of myself and taken off the Imuran. I would have him call his GI and talk to him about the body aches, his GI might want to go a different route. What is BC powders? I have never heard of it
 
Thank you for all your replies, he had started feeling better, now back to crappy feeling. It's weird, he went on November 19th for his blood tests. We got a letter today that everything all levels were normal, and he should stay on the dose he is on. But, apparantly they didnt mention a follow up blood test, and neither did my husband, so I gotta get on that tommorow. Since it has been over a week now. David, they did some blood tests before he went on the medicine. He doesnt have another appt till January 11th.
 
OH yea, Afidz, BC powders are just like goody powders, NSAIDS, basically asprin crushed up. Works quicker than asprin, but terrible for your gut.
 

hawkeye

Moderator
Staff member
Thank you for all your replies, he had started feeling better, now back to crappy feeling. It's weird, he went on November 19th for his blood tests. We got a letter today that everything all levels were normal, and he should stay on the dose he is on. But, apparantly they didnt mention a follow up blood test, and neither did my husband, so I gotta get on that tommorow. Since it has been over a week now. David, they did some blood tests before he went on the medicine. He doesnt have another appt till January 11th.
I was on blood work every three months but my new GI stepped it up to every 2 months
 

David

Co-Founder
Location
Naples, Florida
Let me see if I understand this correctly:

1. They tested his blood before putting him on the Imuran.
2. He went on the Imuran around November 7th or so.
3. He hasn't had any blood tests since then?
 
Only side effect I had was paralysis, unable to stand up or walk on my own. When I went to the ER they thought it was neurological so they did a MRI scan. They obviously didn't find anything, so they did a bunch of bloodwork and some good doctors in my area couldn't figure out why was having a reaction with Imuran like that. None the less when I stop taking it and they flushed My system with saline I got better. Still can't make sense of my Imuran reaction. Neither can the doctors!
 
Location
da UP
It is a potent medication. My Dr. thinks it's the best there is, at least for me. I tolerate it somewhat. After a week or two on the prescribed does...I get aches, have lethargy and I think it causes diarrhea. So I stop taking it til I feel better then begin again. I have told my Dr this and he nods his head. He is a good Dr so if he had an alternative I think he would let me know. Good Luck to your husband and make him do some of the work for himself. Maybe I am cold and heartless, no I am not.
 

David

Co-Founder
Location
Naples, Florida
Ahumado, what that means is you're avoiding getting the medication to its therapeutic level. It actually has to build up in your system over the course of a few months before it starts working effectively and if you keep starting and stopping, you're never getting to that point, or at least not staying there.

If you can't handle the side effects, please get on another medication (or try some of the tips found in this forum for reducing the side effects) as what you're doing isn't going to help you. That your doctor hasn't communicated this to you is concerning to me.
 
Location
da UP
Concerns me too. I am making a choice. DO I want to be sick all the time from medication or do I not want to. Everything you wrote is true but I think my Dr knows all this as well. Thank You for the reply.
 
I had a whole body rheumatic flare on Imuran. Couldn't move my joints without tremendous pain after 2 weeks on it. Doc chalked it up to an unusual side effect and now it's on my banned meds list.
 
Location
da UP
Ahumdo

What amount of aza does your dr have you and what level did you start at?
I take two 50 mg per day. 1 in AM 1 in PM.

I started higher...I think it was 250 per day but I forget.

It was cut down to a level I could tolerate. The metabolite test (which is very expensive) shows I am below therapeutic but what do they know? They are merely the creators of the drug and the people that study it. :ysmile:

Something is better than nothing and when I can tolerate this (if) then I will give it a boost
 
Location
da UP
I had a whole body rheumatic flare on Imuran. Couldn't move my joints without tremendous pain after 2 weeks on it. Doc chalked it up to an unusual side effect and now it's on my banned meds list.
It's an immunosupressive <---however it's spelled
And that means it can let other bad asses thru to dance on you.

I had my prostrate reamed out last year and I now have recurring UTI's cause of this drug. They aren't really bad but bad enough to go whew hoo hoo hoo. I stop the drug and they go away in a day or so. What ya gonna do?
 

Catherine

Moderator
So your doing better at 100mg. That's great.

Sarah started at 50mg, then moved to 75mg and finially to 100mg. We currently for the results of the test you mentioned and hoped to increase aza. She appears to have no side effects.
 
Location
da UP
So your doing better at 100mg. That's great.

Sarah started at 50mg, then moved to 75mg and finially to 100mg. We currently for the results of the test you mentioned and hoped to increase aza. She appears to have no side effects.
Good Luck to you and Sarah
 
I've been taking imuran about a month along with blood work. Still get joint pains along with infections that arn't normal. I've been experiencing more headaches also and I need to lay down and get rest. So confusing I also have aan apointment with doctors this month and next month along with my blood work always on the go.
 
Location
da UP
I've been taking imuran about a month along with blood work. Still get joint pains along with infections that arn't normal. I've been experiencing more headaches also and I need to lay down and get rest. So confusing I also have aan apointment with doctors this month and next month along with my blood work always on the go.
That sounds about right
 
Hello I have had aches and pains in hips , elbows ,theighs, neck and knees I thought It might be arthritis??. I also have neon yellow urine. I have been on 150 mg of Imuran since Aug of 2012, didn't have any issues till I got off Prednisone (about 3 wks ago). Not sure if these aches and pains are from Imuran or not. I go see my G I specialist on the 23 rd of this mth. I go for bloodwork every 2 wks bumped up from once a mth because of levels n my Liver. good luck cedmonds, and everyone else who are having issues.
 
Severe back pain then paralysis due to a neurological issue doctors couldn't make any sense of, it's a chemical reaction I got.
 
OMG, Im sorry for that !! I think mine is bad arthritis, Osteoarthritis runs in my family . :( I sure hope all is better with you. :)
 
My doctor increased my azathioprine from 50mg to 150mg over the summer. Within weeks my joints hurt so badly I would wake up at night with my hands clenched. I finally decided this wasn't normal and called the doctor in October. He put me back down to 100mg. Unfortunately, my last blood test showed that the dosage I am on is not doing what it should so I got a call from the doc this week that they want to up my dosage to 125mg. Very nervous that I will start having the joint aches again, although I was assured that if that happens I can drop the level again. My question is, if the dosage I am on isn't doing what it is supposed to be doing, and I can't go up in dosage due to side effects, should I even be taking this medicine to begin with?
 
My doctor increased my azathioprine from 50mg to 150mg over the summer. Within weeks my joints hurt so badly I would wake up at night with my hands clenched. I finally decided this wasn't normal and called the doctor in October. He put me back down to 100mg. Unfortunately, my last blood test showed that the dosage I am on is not doing what it should so I got a call from the doc this week that they want to up my dosage to 125mg. Very nervous that I will start having the joint aches again, although I was assured that if that happens I can drop the level again. My question is, if the dosage I am on isn't doing what it is supposed to be doing, and I can't go up in dosage due to side effects, should I even be taking this medicine to begin with?
I wouldnt take it. It's one of the reasons why I stopped taking it. Also strange neurological reaction. There are alternatives.
 

David

Co-Founder
Location
Naples, Florida
Sugarplum, I think you should probably be on the medication, yes. Optimizing the dose can be a little tricky but once they figure it out, it can be an excellent treatment. Did they do a TPMT test to help determine what the optimal dosage for you might be? Those tests help determine how you metabolize the medication. If 150mg was terrible for you but 100mg isn't therapeutic and 125mg doesn't work for you, they MAY need to drop your dose and add Allopurinol. I suggest you research that combination and discuss it with your doctor.
 
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