Could Imuran cause Angioedema?

Imuran, or azathioprine, is what I  am taking to help with the pain of myositis. It is used to suppress the immune system. I have some new symptoms which include painful swelling of tongue, hands and feet and a rapid weight gain. I rang my specialist who said it was an unusual side affect of immunosuppressants but he thought it sounded like angioedema. I had never heard of this.

When I later explored the net this is what I found:
Could Imuran cause Angioedema? on eHealthMe which is a site that checks side effects, drug interactions, efficacies, reported by 5 million people since 1977.

On Oct, 5, 2012: 8,507 people reported to have side effects when taking Imuran. Among them, 4 people (0.05%) have Angioedema.

So this means, while quite a small percentage, some people, like me, do get angioedema when taking Imuran. I have been taking this drug for nearly a year so it is not an immediate reaction. At first I had nausea but after about 3 weeks and changing when I took the drug to the night, that went away.

Read more of my story with Imuran.

Something's working

I am feeling better than I have for years so something that I am doing is obviously working. So what am I doing?

• Hydrotherapy twice a week. The classes are run by a physiotherapist and are very mild.
• Taking more immunosuppressants under specialist's orders.
• Taking glucosamine and Vitamin D under rheumatologist's suggestion.

More research needed on immunosuppressant treatment for myositis

More investigation into the efficiency of immunosuppressant and immunomodulatory agents in dermatomyositis and polymyositis is needed according to the Neuromuscular Disease Group of The Cochrane Database of Systematic Reviews.*

Immunosuppressants suppress the immune system and  immunomodulatory therapies modify it to alter symptoms of disease. These treatments are used commonly in clinical practice with corticosteroids or when corticosteroids do not work or are not tolerated.

"The small number of randomised trials are inadequate to decide whether these agents are beneficial in dermatomyositis and polymyositis. One small trial of intravenous immunoglobulin in dermatomyositis suggests that it is beneficial. More randomised controlled trials are needed."  This is a Cochrane* review plain language summary, prepared and maintained by The Cochrane Collaboration, Copyright © 2011.  Full text available in The Cochrane Library (ISSN 1464-780X).

* What is Cochrane - a systematic review of randomised controlled trials - using evidence from randomised controlled trials (RCT's) is "likely to provide much more reliable information than other sources of evidence."

Is this a symptom of the immunosuppressants?

3D structural formulae of Azathioprine

Okay, so I think the immunosuppressants may be working now. I have been hopeful for just over a week, but dread horror I THINK MY HAIR IS FALLING OUT! So here we are again - a balancing act? a fine line?  I'm not sure what to call it but it often seems to come to this - a pay out for improvement.  Am I prepared to lose my "crowning glory" to improve? The answer would be clear if the improvement was more obvious but so far I have only noticed 1 symptom has gone, amongst a myriad of symptoms. I know I will keep taking the Imuran for now but not sure how long.
I just checked MedicineNet for the listed side effects of Azathioprine, the drug I am on:
"SIDE EFFECTS: The most common serious side effects of azathioprine involve the cells of the blood and gastrointestinal system. Azathioprine can cause serious lowering of the white blood cell count, resulting in an increased risk of infections. This effect is reversed when the dose of azathioprine is reduced or temporarily discontinued. Azathioprine can cause nausea, vomiting, and loss of appetite, which may resolve when the daily dose is reduced or divided and taken more than once a day. Azathioprine can cause liver toxicity (for example, in less than 1% of rheumatoid arthritis patients). All patients taking azathioprine require regular testing of blood for blood cell counts and liver tests to monitor for side effects of azathioprine. Other side effects encountered less frequently include fatigue, hair loss, joint pains, and diarrhea."
I was hoping not to find it listed as aside effect. I was hoping I was imagining it.

maybe the immunosuppressants are working

The feeling like I have ben punched in both my upper arms is gone. This was a constant pain. I have been taking the Imuran since February and it is a 6 month trial. This is 3 months, so far, and I am hoping less pain is in store. Being able to blog for longer than 15 minutes would be good. Signing off with cramping pain in upper right arm.

Side effects?

Today I am feeling nauseous again.
I presume it is the immunosuppressant drugs I am taking.
I have been taking the full dose for nearly a week now, which coincides with the sick feeling in the stomach. It may just be a coincidence. Who knows?