treatment options

Im 30 years old, recently diagnosed with GM Dec 2011. I have a 6 year old son, breastfed for 4 months. Shall i have this drained once more to ease my symptoms or shall i go to the Rheumatologist??

[Red11483]

Both. Drainings are a more immediate relief but a good rheumatologist can give u more options for long term treatments. I'm currently taking methotrexate but we started with a combo of methotrexate and prednisone then dosed off the prednisone and upped my methotrexate after about 4 months.  Do some research and look at your options and what is best for u!

[needhelpwith_gm2011]

How are your lumps now? Has it shrunk since u started taking MTX and prednisone?

[Red11483]

Yes they have and my last mammogram had less inflammation. They aren't gone but my boob feels more normal and I haven't had anything burst since the end of October 2011 . I still have pains but not constant I even have a few days with no pain sometimes I also still have muscle spasms but life is much better these days for sure. I do have some thinning of my hair and nausea sometimes but my quality of life is so improved compared to weekly drainings this time last year. I have hope for continued improvement and if u can deal with the steroids combo for about 4 months I recommend it. U can inbox me if u have questions or email me starbabi2003@yahoo

Nicole

[nadianomas]

Hi,
I've been dealing with GM for about a year and a half now and I've seen two surgeons, one who is a breast specialist.  The first Dr. didn't even know what I had and did an incision in one of the breasts, tried five different antibiotics and anti fungal meds at the hospital, and finally wanted to remove my milk ducts under general anesthesia.  The second Dr. immediately knew what I had but absolutely believed in a wait and see approach with draining of bumps as needed.  She did a core biopsy and other tests for pathogens.   I finally stopped seeing that doctor about eight months ago since I felt she didn't know how to treat my condition either.  I got little to no information about my condition from her, unfortunately she did not spend more than 90 seconds with me per visit.   Also, I found the testing and aspirations to be as painful or more than if I just let the "bumps" open up on their own and drain.  
I found healing took a very long time.  Especially if any medical procedures had taken place.  The original "bump" that suffered the incision and the core biopsy took about 5-6 months to heal, other abscesses took about 1-2 months per occurrence.  
Fortunately, after about 14 months my original affected breast finally healed.   Unfortunately, my other breast developed problems about two months ago.  It's tough to decide weather or not to wait it out this time around.  Especially since now both breasts hurt with the stabbing pains mentioned by others affected by GM.  Right now, I'm trying to decide weather or not to go on steroids, however, for that to happen I would have to find a new doctor.  
I hope you find a good doctor in your area.  May God heal us all from this confusing disease.

[JoJo45]

Hi there -

I was just reading your post with profound sadness that your care to date has been so poor.

Where are you located?  in the US?  What city centre if so...I am hoping we can refer you to a better educated medical professional.

I do think it is important to manage this disease, not just let it manage you, but that said, a) it should be common knowledge in the medical community by now, that almost 100% of GM cases are completely sterile - use of broad based antibiotic is not indicated in anyway and of course the overuse of antibiotic is very problematic.  Possibly, a skin antibiotic to fight any secondary infection that may occur in the open areas of breast, but I have heard of way too many women being over-treated and having their entire systems thrown out of balance for improper antibiotic use for GM.  

I have never heard about about removing milk ducts, although I have heard of elevated prolactin levels put forward as one of the possible cause of GM - but I stress ONE of the causes as for interest I got this disease when I was 44 and perimenopausal, having never breast fed or had children.  I am SO glad you did not allow this doctor to cut in to your breast.  Many women have found that disturbing the breast with any type of cutting, will just cause further inflammation and wound healing is often very complicated.

Please let the forum community know if we can support you by offering a better educated care giver referral.

Sending good healing wishes your way.

JoJo

[nadianomas]

Thanks for your kind words and info.  I'm in the Austin/San Antonio area.  

I'm feeling pretty exhausted lately.  I can get little to nothing done on pretty much a daily basis.  

I'm considering seeing an endocrinologist who specializes in the pituitary and see where that leads me.  

Thanks again....