Hi Everyone, I was sent to this site by someone on the PN site. I hope you don't mind a quick background on my health. I started with burning feet three and a half years ago that traveled very quickly to both legs, arms and the right side of my face. I had a positive small nerve biopsy that diagnosed small fiber neuropathy. I have been tested for everything under the sun. I was told I had RSD and had treatment for that and found out that is not it. I do have hypothyroid and have for about 15 years. I take synthyroid for that. I take Cymbalta for the nerve pain. I started plaquenil from my rheumo and had to stop due to the fact that I and others saw a significant personality change. Today he prescribed Imuran. That is how I ended up here. I was told some of you have been on Imuran and may be able to speak to me about it.
Some more background, Hopkins told me possible Sjogrens. Rhemo said maybe and possibly just did not turn positive yet for lupus. I have asked them and they have tested me for MG. Since I stopped the Plaqnil I have had severe joint and muscle pain and weakness.
My neuro told tried to get IVIG twice but insurance said no. So now my rheumo is trying. At first he said he was not going to put me on another med until we found out about IVIG. When he heard my symptoms have gotten so much worse he decided to go with the Imuran. Has anyone taken this and is there anything I should watch out for? Thanks, hopeful

Hi, hopeful, welcome. We may not have the same symptoms, but most of us here know what it's like to have a debilitating mysterious disease that the doctors have trouble diagnosing.

I'm on Imuran (azathioprine). I've been on it for about nine months. Here are some things I know about it.

Before you go on it, you should have a blood test to make sure you don't have a genetic inability to metabolize it. It's a rare condition, but it would make Imuran toxic for you. The test you need is called a TPMT test. Here's a detailed explanation: http://emedicine.medscape.com/article/1829596-overview

While you're on Imuran, you should have regular blood tests--blood count and liver panels, I think--to make sure it's not causing dangerous side effects. You will need blood tests pretty often at first, maybe once every two weeks, and then less often if you seem to be tolerating it. Watch out for unusual bruising, or fevers.

I haven't noticed any side effects from Imuran, except perhaps slightly decreased appetite for a few weeks, which went away. Another member had a much worse experience with it and lost way too much weight.

For myasthenia gravis, my doctor said to expect it to take between six and fifteen months to decrease my symptoms. I haven't noticed any improvement yet.

The label of my drug bottle says to wash my hands after touching the pills, so as not to touch the inside of my nose or the corners of my eyes with fingers that have pill residue on them.

Abby

I was on Imuran for 12 months and all it did was make me very sick. I was eating maybe 600 calories a day. Lost 35 pounds and my Neuro later said he was very sorry. He knew the Imuran was making me sick. Keep in mind we are all different and these drugs give different results to each of us. So far only thing that has really helped me is IVIG and that's not everytime.
mIKE

I was on Imuran for five years for MG. That is the max amount of time one should stay on it as it can cause lymphoma. While I was on it, it caused me some digestive problems ie. diarrhea. I have been off of it a little over a month now and am feeling better. If you can't tolerate the side effects there are other options i'm sure.

Hang in there.....

Blessings to you.

My understanding is that the risk of lymphoma from long-term use of azathioprine is only established in patients who are taking it for inflammatory bowel disease. The risk for patients with myasthenia gravis is not so clear.

That doesn't mean there's no risk.

Abby

Hello and Thank You everyone! I appreciate all the informatino you have given me. Abby my doctor is sending me lab slips in the mail I will be sure to check and see if TPMT is added if not I will ask for it. Pingpongman I will keep my eyes open for lose of appetite and nausea. Singergal64 what I am hoping for is if I receive the IVIG I can stop the Imuran. I hope the IVIG works if we can get the insurance company to pay for them. I am hoping the blood work they will be sending me for will show immediately if the imuran is starting to show signs of lymphoma. I started it last night and have gone to the bathroom a few times today (sorry) but other than that I feel OK. Abby I really hope it does not take that long to work. I don't know how much longer I can take this. I had a few hour 4-5 sleep last night so my mind set is a little better.
I only wish I knew what this is. How can we fight something when we don't know what it is. Friends say," Oh all your tests came back negative that is good." I feel torn about that.
I have a very low toerance for medication so they are starting very low. Half a pill M,W,F.
then they will build up after a few weeks. Well, thanks again. Good Luck everyone. You never know I may be back

Hi, I don't know if you're still reading, but if you are, I just want to clarify a few things.

The TPMT should have been done before you started the Imuran. The doctor should not start you on Imuran until he gets the results of the test. Last I heard, the FDA advised, but did not require, the test. So it's possible your doctor decided not to do it. For people who are born without a certain enzyme, Imuran is poisonous. But this condition is rare--I think it occurs in less than 1% of the population.

IVIG, for any condition, is only a temporary treatment. For most people it only works for about six weeks.

Lymphoma is a kind of cancer. It is very rare side-effect of Imuran, and mostly occurs in people taking Imuran for Crohn's and other bowel diseases. The blood tests your doctor ordered are looking for more common side-effects of Imuran (like low platelet counts) that would go away if you stop taking the Imuran.

Hope that makes sense.

Abby