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Posted 6/5/2009 7:53 PM (GMT 0)
Hello Everyone,

I have a question about Imuran.  I'm supposed to be starting it soon and I was wondering what I might expect.  I researched it online and it sounds kind of scary.  If you have taken it how long did it take to show an improvement? What were the most common side effects? Did everyone have hair loss? I already have such a huge problem with hair loss it's freaking me out. Thanks for any information; I'm trying to brace myself :)

Posted 6/5/2009 8:29 PM (GMT 0)
Hi CATZZ, Imuran helps me immensely! I started out on 50mg a day with little to no side effects and over the last 4 years my dose has increased to 125mg (2 1/2 tabs). Just make sure you take it with food, plenty of food or you may have some nausea. Your rheumy should also monitor your CBC and liver function very closely. I had mine checked every 2 weeks for 6 weeks and then every 2 months after that. I don't know how well it works for my joint pain as it mostly helps with my GI issues caused by lupus.

I hope it works well for you! Let us know how it goes and if you have any more questions.
Posted 6/5/2009 9:49 PM (GMT 0)
Hey Catzz! I took Imuran for almost a year! I had no physical side effects. Didnt even have the nausesness. The only thing it did for me was slightly lower my blood count. I started at 50 mg and over the year moved up to 150 mg. At that time I had my blood work checked every 2-3 months. One thing your doctor should have told you is it might take awhile for you to start noticing an improvement. Hopefully it will help you lots :)
Posted 6/6/2009 1:14 AM (GMT 0)
I've been on Imuran for 5 years, originally prescribed for my Crohn's disease. Recently my rheumy upped my Imuran dosage to help the lupus. The only issue I have with Imuran is nausea if I don't take it with enough food. Lots of people with CD take Imuran and some experience fatigue/tiredness feelings. They have found taking it in the evening circumvents that issue.

The blood checks in the beginning are inportant to make sure your white count and liver levels are ok. Hope it works well for you.
Posted 6/6/2009 9:02 AM (GMT 0)
I am one of the rare case that allergic to Imuran. It happened I think a few days after I started Imuran (maybe less than that, couldn't remember exactly). I lost all my hair, and my WBC dropped to almost none. My platelet count was pretty bad also. I had bad mouth ulcer and was hospitalized for 10 days. I looked like a person who had been through chemo. Again, the doc said I am one of the rare cases. The doc told me that most people can tolerate the drug.
Posted 6/7/2009 12:28 AM (GMT 0)
Catzz
This drug saved my life!!!!! I have been on literally everything. Arava (off due to hypertension reaction), Methotrexate (off due to pulmonitis reaction), Cellcept no response, and Im sure there is more but my mind doesnt want to think about it right now. I have been on it for 4 years now. Though I have some pretty bad ups and downs, I no longer have active interstitial lung disease or asthma due to this medication. It litterally has been cured. No Lie. I loose my hair in globs after I wash it but that has always been the case with me. My anti DNS DNA is still really active along with the low C3 C4 but Not have the active lung disease is wonderful. I still have the scarring though that will never go away but thats better than the life I was leading. I wish you all the luck with it. Other than the hair loss, I dont really think I have had any real problems with it.
pearl
Posted 6/7/2009 4:43 AM (GMT 0)
I am on 200mg Imuran and have been on and off imuran for several years. It saved my life and I noticed almost immediate improvement but it can take some time. I have nausea so I take mine at night before bed. I have my liver checked every few months.
Posted 6/8/2009 2:04 PM (GMT 0)
I was on Imuran for 10 days. It took that long for me to react but the reaction was a doozy. Temp of 104, swelling along the spinal cord and intense head and body pain. Dr. said it was a"delayed severe reaction to the drug". Needless to say, I have no idea if it would have helped the lupus. I, too, was told it was rare to react like that, but anything is possible!
Good Luck!
Posted 6/8/2009 6:18 PM (GMT 0)
Imuran is one of the "your mileage may vary" meds. I took it for 10 months, nothing good happened, nothing bad happened. Others have med reactions in 2-10 days. Then others have good results fairly immediately.

My thought is this: If the doctor feels its the next thing to try, he's the trained expert, give it a go!

Cheers,
Posted 6/8/2009 9:38 PM (GMT 0)
I have been on imuran for 4 years.  It has been around for AI diseases and transplants for decades and most patients tolerate it much better than prednisone.  Like all meds, some do not.  Doctors are very familiar with it problems and benefits.

My experience has been mostly good.  No side effects at all for 18 months then it hit my wbc, rbc and platelets.  After lowering the dose it has been fine....no problems.  Some patients experience an intolerance almost immediately and withdraw.

Personally, I would not hesitate to use it if my doctor wanted it.  It takes 4-6 months to become fully effective.

Bill

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