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granulomatous mastitis User Group
my IGM story
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
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my IGM story


I was diagnosed with IGM back in Feb 2012 and saw a breast specialist and rheumatologist.  My doctors gave me intially different antibiotics but none worked and they were recommending I take Methotrexate.  But based on my research the chance of getting well with it is 50% only.  I did further research by asking doctors I know in South East Asia before I take any other medication.  

Here is one note I got from a surgeon in the Philippines that helped me decide on my next step:

Little is known about the optimal therapy. The natural
history of idiopathic granulomatous mastitis is often
that of a self-limiting condition and 50 % of the cases
recover uneventfully. The usual therapy is wide local
excision of the breast mass. Postoperative wound infection,
fistulas, chronic suppuration and recurrence are
often seen, necessitating repeated surgical interventions.
Limited excision alone has a strong tendency for persistence
or recurrence
The effect of a short course of high-dose prednisone
(60mg/day during three weeks) can be quite impressive
(reducing size of the lesion and enhancing complete
lesion after surgery). Some authors suggest that in
patients with proved granulomatous mastitis a trial of
corticosteroids should be given before excision, allowing
more conservative surgery. Recurrence can be treated
successfully with another course of corticosteroid
therapy. In patients with a high prolactin level who have
recurrence, medical treatment to control prolactin level
may be useful. In cases of delayed wound healing a short
therapy of high-dose steroids can be efficient.
The doses of the corticosteroids should be gradually
tapered to avoid an exacerbation of the disease process.
Both complete resection or corticosteroid therapy can be
recommended as treatment options.


Since I found out that the chance of the my IGM healing on its own versus with medication is the same, I opted not to take any medications.  I was more afraid of the side effects of the medications than the IGM.  

I just continued to manage my  abscesses with my doctors and changed my diet.  I basically concentrated on giving my body nutrients that would improve my immune system.  Eating more vegetables, berries, fruits, drinking lots of green tea and eating less processed food and I've included exercising and getting enough rest.   So far it has worked!! My body has healed itself!  My inflammation has subsided and I have no new abscess for a month now and the ones I had before have healed.  

I hope my story can help!

Regards,
Fidela



7 Comments
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Avatar_f_tn
Fidela, I was so glad to read your story because I have taken the same decision as you have.  I was told that I could take a low dose of methotrexate for 18 months and that in the almost 12 patients the doctor had treated this way, the condition had disappeared.  I, too, was worried about the side effects so I decided to not do the treatment.  Instead, I went to see some altenrative medicine people who treat with Ayurveda and I have also changed my diet.  I have cut out gluten because apparently I have an intolerance to it and it is causing inflammation so I am hoping this will work.  I have felt better, less tired and my breast has not gotten worse.  I had a little flare up, but nothing has burst.  I haven't had an abscesses like a lot of the women on the site that I've read about.  I currently have a bruise and it is sensitive and I've been wondering if this is an abscess, but it doesn't hurt a lot and hasn't burst.  I would be so anxious to continue talking to you so that we can follow our progress together.  I am in Salinas, California and I have been seeing doctors at Stanford in Palo Alto.  Where are you?

I look forward to hearing from you.

Ana
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Avatar_f_tn
Hi Fidela,

I was diagnosed with Granulomatous mastitis in October 2012. Oncology surgeon has put me on steroids - wysolone 10 mg for 45 days.  I had taken it for 10-12 days, the abscess (pus) started coming out.  Doctor advised I had to go under surgery to remove the pus - lumpectomy. Surgery happened and I was on antibiotics and steroids for 7 days.  Immediate after 1 month, again the pus started coming out. It was really shocking for us. Doctor tried to drain out the pus,but again the pus collection happened and hardness in the breast.  He had advised to go for aspiration and then he put me on steroids for 30 days.  After 30 days, the hardness area become soft with pus. He drained out the pus and couldn't completely....so got the  hardness again in 2 places now.  Doctor is asking me to go for surgery again.... Please advise.  I'm really tensed and scared of this.. and he is not sure that this will not reoccur again.

I read pomegranate juice will help, I started taking it from today.... pls let me know if any other ayurveda or any other medicine will help me....

thank you so much...waiting for your response.

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4628530_tn?1369112686
Hi ladies,
It is wonderful to hear this route has been beneficial to you both! This is all new to me. It is my first flare up and has lasted over a month. I'm also pregnant and the only thing the Dr wants to do is monitor its progress until it "spontaneously" heals. Four days ago I started juicing and changed my diet. I felt my breast sting while drinking these juices and think it could be stimulating my breast like when I used to drink coffee or it could just be reacting to the citric acid. Either way, on the second day, an abscess came open. I'm getting really dark red spots and the Dr said it is the pus coming to the surface. If I wasn't pregnant I would do a juice fast for a few days to cleanse my system. I read somewhere that the bowels contribute to infections and lowering of immune system defenses. Although I'm trying to keep my diet as plant based as possible, I know I need some animal protein and grains for sustenance for the baby. I have stayed away from  processed foods too. W hat are some examples of things that you eat? I'm running out of ideas. I will be searching for some homeopathic help today. Since I'm afraid to to drink certain teas because of the baby, I started drinking black tea(good for the immune system?) too. I heard about the pomegranate juice but worried that the store bought kind may contain too much sugar which will aggravate the infection.I hope to hear from you soon. I'd like to know what things you are doing/have done to help.
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Avatar_f_tn
thanks for your response.

Please let me know what are the steps you are taking to clear from this disease.  what are the other medicines you are taking.
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4628530_tn?1369112686
I'm only taking Motrin from time to time. Pus is still coming out of a drain the surgeon put in about two weeks ago. Some days my breast feels soft and other days it feels inflamed.I saw an acupuncturist two days ago. He was unable to put the pins in all the regular areas because of my pregnancy. I'm not certain if it really helped, but I can say that the following day was the first time I felt okay enough to clean my whole house. He also prescribed pure Echinacea droplets. He prescribed some Chinese herbs called Dan Zhi, Xiao Yao San. I look ed up the single ingredients and it contains herbs that "draw out pus," "heal wounds," "menstrual cramps," and stuff for the immune system. It sounds like it would help, but I am really scared to take them because I'm afraid it could induce labor or harm the baby.
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Avatar_m_tn

Hi Ana,

Sorry for the delayed response.

I too have the same experience. When I am stressed, I could feel some bruising  under my skin but there is no flare up. When this happens, I try to relieve my stress and eat more berries or any immune boosting food and rest.  After a couple of days, the bruising goes away.  I have now a built in stress indicator in my body =)  

I saw a breast specialist in Summit, NJ.  Fortunately, I haven't had any abscess in over a year now.  

How have you been?

Regards,
Fidela
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Avatar_m_tn

It's been a while since your post but I hope your able to manage your IGM.  
It seems you were on the right track with the alternative Chinese medication and herbs.   Did the herbs helped?  

Regards,
Fidela
  
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