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granulomatous mastitis User Group
There is hope...hopefully!!!!
About This Group:

This group is intended as a meeting place and forum for those who have been diagnosed with granulomatous mastitis ('GM') or idiopathic granulomatous mastitis ('IGM'). I think one of the greatest challenges with this disease is its rarity and the associated lack of understanding in the medical community. But we can share here - and hopefully make the healing process a little easier for each other.

Founded by JoJo45 on January 17, 2010
254 members
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There is hope...hopefully!!!!

Hi everyone. I had IGM in my right breast back in 2000. After multiple biopsy's, oral and IV steroids, open wide excision's, and every antibotic (antibiotic) on the market I finally had a right simple mastectomy in 12/00. I was great for a month until I decided to do reconstruction with a saline implant. With in a short time, mass formations started again and back to steroids and antibotics. The implant was removed...the area improved. I was 30 y.o., stupidily wanted to be "whole" and attempted reconstruction again. Well this time I went with my own tummy tissue...and it clotted off and I was again with NOTHING (that was in 2004). Then about 3 months after that failure, the IGM was in my axilla (R. armpit area) and it was explained that there is breast tissue there, and so the process started over!!!!
OK now for the good news!!! This time I saw an outstanding rheumatogist in Chicago and he decided to treat,  "Out of the box". He explained that my blood work, and my symptoms matched an auto-immune patient and so he would treat me like that. So IV Remaciad infusions become my life for about 8 months (oh and oral methotraxate also). Well I haven't had a problem since those ended....and was even able to complete a saline implant reconstruction in 2006. I'm doing amazingly well.
My heart is breaking for all you women still going thru this...I have horrible scars, but sooo happy to be done with that whole process. I'm really hoping more education is provided to surgeons, rheumatolgist, and GP's. During this process, I was asked by a infectious disease doctor if I was doing this to myself!!! OMG....really, are you that stupid?!?!?!  Luckily my primary doc and surgeon were even more angry at him than I was....but it does give you a very lonely, sinking feeling.
Please everyone take care!!! I so wish this was around 10 years ago!!!!
2 Comments
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Thanks for sharing your experience with us - very helpful

I am glad you have found a good resolution and you would be one of the early cases - 10 years on they still don't seem to know what to do with us, very disconcerting.
I guess we need to keep up the good fight for awareness.  Women are still being misdiagnosed!

But every time we share our stories we create a little more knowledge and awareness and support for other women and their doctors - so everyone here is doing some good, at generally a horrible time for themselves, and I am in awe of the courage I read of in the forum from some of these women.  STRONG -- BUT WITH GRACE is how I would begin to describe the way they handle the journey with this disease and how most cope -- all give me inspiration all of the time.  It is extremely hard to have such a rare disease, I think most of us feel alone...at least finally some caregivers are gaining awareness and the related experience of this disease (as it is finally being diagnosed properly in some areas) -- this is what we need to stop the isolation.

Take care, Jo
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Wow, you've been through it!!  I'm sorry for all of your troubles and disappointments, but I am so happy and thank you for sharing your success!
Your right, this disease leaves you feeling alone, hopeless, and lost!  I am 31, recently diagnosed, and out of lack of better options, my doctors and I have decided to do a subcutaneous mastectomy in the one breast with GM.  After reading your post, I have fear, and hope!  I am now on a mission to find a Rheumatoligst and see about the treatment of Remaciad...BEFORE my operation!  I am anxious and extremely nervous!  Thank you so much for giving hope, and congrats on being free of this crazy disease!
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