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Posted 1/25/2008 2:54 AM (GMT 0)
Remicade is not working for me.  I've had my 6th injection.  My doctor has prescribed Imuran.  I have read that some of the side effects are hair loss, fatigue, etc.  He also told me not to rely on what people post on the internet, that not everyone experiences the same symptoms.  Can you please comment on this.  I would be taking one pill per day for one week, two pills per day for the following week, and then stay on three pills per day after that.  150 mg per day.    Is this the normal procedure?  I have read the most people opt to take this medication before bed.  Can all three be taken at once before bed? 
Posted 1/25/2008 3:14 AM (GMT 0)
Tony, I was on Imuran for several years. I really didn't notice any more hair loss than usual. Usually taking it at bedtime helps keep you from being sleepy during the day, as that's a problem for some people.

Most doctors do increase the dosage in steps. You will probably have blood tests to verify that you've reached a therapeutic level, also you'll need frequent blood tests for anemia and liver function. Some docs do these weekly at first.

You can take the entire dose at the same time. Be aware that it will take anywhere from six weeks to six months to become effective, so don't expect a quick turnaround in your symptoms.
Posted 1/25/2008 3:34 AM (GMT 0)
I take 150mg at night, all at once, and I am fine. also, no real problems with hair loss, at all.
however, depending on how you feel, you may find it easier to increase the dose a bit more slowly. I think I did 50mg for a few weeks then 100mg for a few weeks and was probably on it 4 -6 weeks before upping to 150. I got HORRIBLE headaches every time I started it or increased the dose, but those always passed within a few days. But, it is quite an adjustment on the body, so you could increase more slowly. outside of that, I have had no problems with it.

by the way, why did you do remi before imuran? often, people try Imuran first.... just curious....
Posted 1/25/2008 4:34 AM (GMT 0)
Tony,
I went to my gastro today for my Imuran refills and bloodwork, and he stated that most of his patients report no real side effects with Imuran. I am going on 3 years + with this drug and I have no side effects...never have. He has patients going on Imuran for over a decade with only positives.

I started at 75 mg, and am now on 150 mg. I do take them all at night. But I do this not because of fatigue or naseousness, but because its easier to remember for me if I coordinate it with toothbrushing at night. :-) So yes, I do take all three before bed.
I didnt bump up as quickly as you posted though. I think I was on 75 mg for a few months before the promethius test bumped me up to 125 mg.

At any rate...I hope it works for you.

Michele
Posted 1/25/2008 6:26 AM (GMT 0)
Hi, I've been on Imuran for 3 + years and I've never had any noticable side effects. Since it lowers your immune system I get a flu shot every year and make sure to be extra careful around sick people and in public places. Also, I was surprised to hear that your doc put you on remicade before trying Imuran. I don't know much about remicade, but my doctor has always stated that it is a last resort after all other options have been tried. Maybe that's just his opinion though.
Posted 1/25/2008 12:38 PM (GMT 0)
I have been on Imuran for almost a year. Except for having to go for regular blood tests I don't even know I'm on the drug. I take 100 mg a day in the morning. It was a big decision for me to move to Imuran. But, after long discussions with my GI I decided it was a better long-term approach. I am very careful around sick people and I ensure I use hand sanitizer regularly. I don't get sick any more or less than I did before Imuran. So far, so good. Judy
Posted 1/25/2008 1:33 PM (GMT 0)
I've been on Imuran for probably six years. It's really helped keep my disease in check. I've had minor flares, but those were easily managed by adding Rowasa or steroid enemas.

When I was contemplating going on it, I was scared witless! When you read the list of side effects -- especially lymphoma! -- I really balked. I'm glad I got over that initial trepidation and took the Imuran plunge.

I don't really notice any side effects. That said, I do have a huge energy and motivation problem, but I had that before the Imuran and believe that is most likely related to my battle with depression.

Good luck!

Mitz

Oh, I take my Imuran, 100 mgs, each morning, along with my Effexor, probiotic, and a handful of vitamins. No problems.
Posted 1/25/2008 2:14 PM (GMT 0)
have been on the generic of imuran (azathioprine) for almost 3 months. I am on a lot of other drugs but I do think the fatigue and loss of motivation I am experiencing (even though I take 200mg at night) is from the aza. I think I might be losing some hair, there seems to be more stuck in my hairbrush but I have a lot of hair and I may just be looking for something that isn't there........

I'm still on a high dose of pred so I don't know what is truly helping me at this point.

I also got the flu shot (have been getting it for the past 5 years and no flu! always got the flu before) I am also very careful around other people and it was kind of funny, I got my friend hooked on some really good hand lotion and she was out of it and asked for some and then she said I got a really scared look on my face......well she was sick and I didn't want her cold so I made her hold her hand out while I squeezed it over her hand so as not to touch her with anything. I've just basically come out and told some people, listen I am on immune suppressing drugs, I have no immune system and even though you don't seem to have a cold you could be carrying one so I just need to be careful.
Posted 1/25/2008 5:20 PM (GMT 0)
thank you so much i fell alot better reading these posts. i went on remi first because i was so scarred about going on imuran.its the hair loss thing that got me so scarred about imuran. well i hope it works ive been flareing since june 06 and nothing seems to work. thanks guys its nice to know im not the only one with a broken bum devil
Posted 1/27/2008 9:03 PM (GMT 0)
I'm new to this forum. I have Lupus and my doc is just starting me on Imuran with the hope of getting off the pred eventually. I was scared to death to start this because I've read so many scarey stories of side effects but after reading your posts here, I feel much better for it. Thank you.
Posted 1/27/2008 9:31 PM (GMT 0)
Who knows, the Imuran could even have a beneficial effect on your Lupus -- also an autoimmune disease.

Good luck, UC Tony and Prescott.

Mitz
Posted 1/27/2008 11:58 PM (GMT 0)
Do watch out for the side effects though. I am glad everyone who posted has had good luck with it, but Imuran didn't work out for me. It made me extremely ill, headaches, bruising, nausea ... make sure you look at the side effects list and talk to your doctor if you experience any.

Meesh
Posted 1/28/2008 12:10 AM (GMT 0)
Hi I am doing both Remicade and Imuran these 2 drugs work good together. I have no-side effects from either drugs. I do have a full set of hair.
Posted 1/28/2008 6:43 PM (GMT 0)
I've been on Imuran for over a year with no noticeable side effects. I was on as high as 150 mg, but my white blood count got severely low, so my doctor lowered my dose. I am now at only 50 mg and it's still keeping things in check. I even got pregnant on it, so I've had nothing bad as a result of Imuran. And it worked when nothing else but Pred was helping.

-------------------

Age 36

Diagnosed at age 31

Current med: Asacol, Imuran, Canasa (for pregnancy related flare-up)

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