I might be put on Imuran. I'm wondering what I should expect for side effects?

it is possible to end up with some nausea I deal with it by taking it before bed.

Hi

I know exactly what you mean about worrying when taking a new medicine and think most of us have the same feelings.


I have been taking Imuran for over ten years with no problems at all. I would take it any time in preference to Prednisone with all its harmful side effects.

Start it very slowly to let your body get used to it and avoid the most common initial side effect of nausea. I started with 25 mgs every other day for a week then 25 mgs a day for a week and built up that way. I was advised to take it after the evening meal. I and others feel that it helped sleep a little although that useful effect isn't mentioned anywhere.

It is very important to have frequent blood tests to make sure it isn't affecting blood counts or liver. Something like every two weeks for a couple of months then every month depending on what your doctor advises. Now I have the tests every 3/4 months.

I suggest not stopping the Plaquenil. Mixes of meds are the norm these days. Each sort of drug brings its own particular benefits and those of Plaquenil are endlessly impressive, apart from the obvious. For example it reduces cholesterol.
By taking a cocktail of drugs it is possible to fine tune then get the maximum benefit from each with the minimum of effective dosing, thus further reducing the risk of bad side effects.

These days the top doctors recommend staying on Plaquenil even after major therapies, as a sort of insurance and because of all its benefits.

Imuran might seem like a whole new class of drugs but in practice its use is common and very well established. Just think of it as another disease modifying medicine. I have not noticed that I am more prone to infections nor has anybody else I know who takes it. We do not take it at the high doses used to suppress the immune system in organ transplant rejection therapy. Many of the severe side effects mentioned relate to transplant use. There is a test available that can indicate who is likely to respond better to the Imuran without side effects. I can't remember what it is called but your rheumy definitely should know and know if it is available.

Another option in some cases when the Plaquenil isn't enough is to add another antimalarial called Quinacrine. I do not know if that is suitable in your case. I wonder if testing has been done to make sure about the causes of your leg pain and weakness, muscle testing for example. Make sure the tests for anti phospholipid antibodies have been done.

Best of Luck - I hope it does help you but you can't know until you try.

BB

Ellie,

What is your diagnosis?  Do you have an overlapping connective tissue disease or just lupus? 

I have been on imuran for 4 years and had no side effects for 18 months.  Then it lowered my wbc, rbc and platelets.  It had to be lowered to 100mg, then 50 and now I am only on 25mg and have no side effects.  Probably will be taken off it in the near future but there is no rush since I am having no symptoms and no side effects.

There is an increased risk of cancer with imuran.  I have had skin cancer 3x (basal cell carcinoma) in the past 2 years.  It could be debated that it is just due to spending much of my life in the sun but who knows for sure if imuran had any part.  I see the dermatologist every 6 months and have other appropriate and frequent cancer screenings.

Bill

Thanks to all of you in your quick response to my question. It means a lot to me. I have no one else around that can so closely relate to what I'm going through. I appreciate the life advice from those of you who have been on it. Thanks for the tips in taking it before bed, and also making me aware with what to expect, or what "should" happen in regards to regular testing. I guess it does make sense in several ways to stay on the Plaquenil. You know how when you go into a specialists office your brain can turn to "mush" and things get hard to retain? I'm improving when it comes to being prepared for appointments, but I didn't quite catch if I am going to be told to go completely off the Plaquenil once I start Imuran. I guess those will be future questions for me to ask.

As far as testing for what's happening to my legs...that should be happening in the near future. I have not been impressed with the Rheumatologist that I've been seeing for the last 2 years, and that is why I have sought out the second opinion. I have been having trouble with my quads for over a year now, and have been nothing with frustrated with the lack of help received from my Rheumy. He's shown little to no interest. I came to an appointment one day, barely walking and using the walls to help me into his office...all I received was a quick 5 min appointment, was told I was having myalgia, and "see you again in three months." Since then, it's been not that much better...I am so thankful that this new doctor is going to help me get to the bottom of what's going on. I was once (and hope to be again) a very active person. I loved to train to run, and 3 years ago ran a 1/2 marathon. Now I'm suffering hugely if I go for a 10min walk:( I don't fully understand all the tests that he's going to have done on me..I'm a little confused right now. He wants me to see a neurologist specifically for what's happening in my quad muscles, and also work. There was some specific test (don't remember what for) that he said needed approval of funding to send me to the states at the Mayo Clinic to get done.....any idea what that could be?

A few people have asked me what my diagnosis is...well I have noticed other peoples signatures on the bottom of their posts, and I will try to type out what I have the best I can. Thanks again everyone, and I look forward to more communication in the future.