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Avatar universal

Treatments for GM, is Steroids the only option?

Hello Everyone,

I was wondering if Steroids are the only option. When researching all I see is Prednisone and Methotrexate as options for treatments. Has anyone just NOT taking either medicine and what happened? Thanks!
5 Responses
1515564 tn?1431386900
Hi Hailey,

The main treatments that I am aware of are methotrexate and steroids, along with surgery - either complete mastectomy, excision of a particular area or lump, and also surgical drainage of an abscess. Some women are treated with antibiotics, which might help prevent a secondary infection, but I don't believe it does anything for the IGM. Some women have also tried natural alternatives - supplements, etc.

I have chosen not to try most of those treatments. I did take antibiotics for a long period of time - didn't help. And I saw a naturopath for a couple of months and tried several natural treatments - didn't help much either. At one point the naturopath prescribed anti-fungal medications, which made me sicker.

Aside from those things, I haven't tried any of the other treatments. A while ago I read about an IGM study that was done in China. It was a small study (Only 12 women, I believe). Anyway, in that study, they tried "expectant management," whcih basically means waiting and keeing an eye on it for a long period of time without treating it to see what happens. The outcome of that study was that 50% of the women (keep in mind, that is only 6 women) had their symtoms completely resolve without treatment in an average of 14.5 months.  So...I thought that those were decent odds...plus I was really concerned about the side effects of the "normal" IGM treatments....so I decided to just suck it up and see if I could hold out for a while and see what happened. In the meantime, I have been working on healthy habits - exercise, sleep, healthy foods, vitamins, etc.

Anyway, my symptoms started last March. So I am 13 months into this right now. I haven't had any abscesses for 3 months (the last was in January) and I am VERY excited about that. I still have a lot of the other symptoms, I still have painful lumps in my breast. I have swollen lymph nodes, and a lot of fatigue sometimes. So....I am much better than I was, but I wouldn't say that I am "healed" by any means. It does seem like something is working, though. So I am pleased with the results so far. And I'm just hanging in there, like the other women who post on this site.

I don't know what will work for you...and from what I have read from the other women, some of them have worse situations than mine, and if any of us ever have our symtoms resolve on their own, they will be the lucky ones.

But what I have said before is that I think each woman should make the choice that is best for her. AND that each woman should educate herself so that she is able to make an informed decision. If that is steroids or methotrexate or one or the other, so be it. If that is surgery, then that is surgery. I just also believe that doing "nothing" is a valid choice too, and one that we should support each other in also. I have been very frustrated because some of my family have not been supportive of my choice, which only adds to the stress.

Anyway, that's my soapbox issue in this whole mess. I will try to find a link to the study I mentioned and post it here later...you might be able find it by doing a Google search.

Let me know if you have any questions.

Jennifer
1515564 tn?1431386900
Ok...I was wrong...the study involved 8 women, not 12. Here is a link to the abstract for the article. Do any of you know of a way that we can get access to full articles? I am always so frustrated to not be able to access the information without paying.

http://onlinelibrary.wiley.com/doi/10.1111/j.1075-122X.2005.00127.x/abstract
Avatar universal
Hi Hailey,
     I think Jennifer actually said it all..... It just depends from person to person on what treatment you opt for... I have been into this mess since end of Sept10. Began with a large abscess which was black, blue n green(rainbow colours :)) was treated with anti biotics for few days but had to undergo a lumpectomy bcoz the antibiotics didnt do much to that abscess. Moreover my mammogram report was abnormal showing BIRADS 3-4 (suspicious cancer) hence my surgeon asked me to get the area removed. At that time they considered it as a breast abscess and the biospy result showed Lympocytic Mastopathy.
     The problem didnt stop there and abscesses became a weekly routine thats when I went for a second opinion and got it diagnosed as IGM. The breast specialist straight away recommended me for 60 mgs prednisone for 2 weeks. However I did not go for the treatment and she no more wants to see me bcoz I declined her treatment. She asked me to see a Rheumatologist since i also had joint pains and stuff. But I know she'll either suggest Prednisone or Methotrexate and so I'm yet to take an appoinment with her.
     During all this time I've had 4 abscesses after the surgery which I get it drained at the hospital (thats if it doesn't burst open on its own). To add on to all this my insurance doesnt cover this mess hence I'm burdened with additional thinking. Just like Jennifer i also have made some changes to my diet excluding all the inflammatory foods (less dairy,eggs, meat etc). I was never into exercises but when I joined a gym inorder to get a lil fit my abscesses were getting bad. Hence its just light forms at the moment like walking n yoga.
     Did try homoepathy for a while but didnt work infact it triggered pain n similiar symptoms in the other breast hence I quit those meds too. Right now taking Evening primrose, Vit E, Vit C with B complex as supplements. Fish oil gave me bad hair fall so even thats dumped :) ..I do take anti-inflammatory meds like Danzen n Olfen once a while especially during abscess n stuff.. They are atleast better than the steroids i think... So in short no steroids for me ...I'll however keep a close look at it on any major changes besides the abscesses and consult the surgeon. Its wait n watch for me at the moment.
      Listen to everybody but do what your heart says. Be calm and composed while making any decisions and dont let anything force you. Do what you think is best for you and your body coz everyones severity is on a different level. So things that work for others may not work for you and vice versa. All the best dear.
Avatar universal
Hi Jennifer and Mum,!

Thank you both for responding! I was 5 months pregnant when I was diagnosed with GM back in October 2010 so I've been dealing with this for 6 months now. All I have read and heard from my dr's - obgyn, the breast specialist and the rheumatologist is steroids is the treatment. And take in mind NONE of them have ever seen or treated anyone with this disease! I feel ignorant for not researching it more back then but to be honest my focus was on my baby. It was like second nature just to go have an abscess drained every time I developed one. She would give me antibiotics but they didnt help. I NEVER actually considered NOT DOING ANYTHING and OPTION! I have been taking prednisone for 2 1/2 months now but a very low dosage 5mg. The breast specialist thinks I should increase to 60mg now that Ive had the baby but to be honest now that I've been researching more and reading on the side effects I'm thinking it twice. Specially since there is no "Guarantee" that it will work. And many women report after they start to wing of the steroids the GM returns. I want to stop taking the 5mg of prednisone and try more natural alternatives. Thank You ladies for your input! Its so comforting to be able to communicate with other women that are going thru the same thing. Maybe at different levels but at the end of the day were in the same boat! You have given me lots to think about. Thank you!
Avatar universal
Hi Hailey

I did have a look and I have not found any treatment levels at 5mg, usually 20-30 mg/day for longer periods or 60 for shorther periods.

It is up to you, and your pain and symptom levels as to how you treat this.

You do have the power and options over your own body and treatment.

In my case, the pain and abcesses were too great to ignore, so that decision was made for me.

Best wishes, Jo
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