Anyone in the UK reading in?

[Mac0411]

I've been reading a few of the threads and the stuff you guys know is incredible.  I was diagnosed with GM (presumed idiopathic because nothing else is showing up) in July after tenderness in my right breast, nipple retracted.  I had a core biopsy which has continued to weep for the last 3 months, I've had 11 courses of antibiotics and now I seem to have a breast abscess the size of  a golf ball on the same breast.  I'm on 10mg of prednisolene daily but feel shaky/anxious at various times on it. I also had erythema nodusm with joint pain for a few months which was unbearable and now I have this abscess.  Does it ever get better :-(

[Cellro]

Try not to read all the stories about mastectomies etc - there's a fine line between being informed and being terrified, and that stuff scared the life out of me. Try to remember that most of us only use this forum when we're in a bad way and, like me, seldom come on when we're feeling better.
If the medication is making you feel bad, consider getting a second opinion - and bear in mind that steroids can slow down skin healing.
Not sure where you're based, but I saw Dr Zammit in Brighton hospital. He is a very calm, reassuring voice of reason. I hope things improve for you soon as I know how awful it is. For many people, it does seem to resolve within a year or so, so it's still relatively early days for you - mine was particularly oozy 4/5/6 months in xx

[Mac0411]

Hi, nice to meet someone closer to home.  Very glad for you that it was not cancer but that must have been a huge worry.  I luckily didn't have that worry - not sure why - just ignorance on my part I guess.  I've got two abscesses now, one is open and was healing but now I'm not so sure.  It's really painful, dressing seems to make it worse and I can't hug my two young daughters properly which makes me cry (more!).  The other abscess was drained last week - wasn't as bad as last time but really not looking forward to it happening again.  The steroids are making me angry - even my husband has noticed - and the pain killers are making me fuzzy headed.  Not a great combination.  It's encouraging to know that the oozing is standard and not just a result of the steroids fighting with the body trying to heal.  And even better to hear that your wounds are healing over and it can be done.  I think the thing that is worrying is that I have no idea where this is going.  I never knew about the oozing, the abscesses, possibility of mastectomy even (not sure if that is done in the UK or what) etc so each time I think I've reached the worst bit something else happens to make me realise it wasn't so bad before!  It's really stressful too.  So to ramble but I'm glad I'm not alone and glad things are improving for you.  Some way to go for me.

[Cellro]

Hi

I thought I'd drop you a line as it's rare to see someone else from the UK on here.
I haven't been on here much for a while, but I was diagnosed with granulomatous mastitis in April - after being pretty much told it was advanced cancer.
I'd had breast pain and swelling that got steadily worse over a month, then core biopsy and MRI. Consultant didn't believe benign biopsy, so did another and took a dozen samples - benign.
He explained that he's seeing this condition more and more and wanted to watch and wait. I'm 40, with a seven-year-old, and was terrified that he was wrong. I was concerned that this no treatment option was a bad idea - especially as the two biopsy sites didn't close for months and continually oozed yellow fluid.
I read up on it and assumed this was a sinus tract, had infections, abscesses etc. I was taking doxycycline antibiotic as all the stress made a previous skin condition flare up. I also took turmeric capsules and cod liver oil.
The pain and swelling eased off after a couple of months and in August the skin started trying to heal up. A few times it formed a sort of head, popped and opened up again, but gradually started staying closed for longer.
It has now been closed since sept, scars look less angry and dented areas in my breast have filled out.
I don't see consultant again till Jan but last time, at end of Aug, he very calmly said, 'oh yes, this is what I hoped would happen.' I'm so glad I didn't take medication - I very nearly pushed for it - and maybe I was lucky and had minor case. But although I do worry it will return I don't really dwell on it any more. It has taken nine months to get to this point.
Try to stay positive as it seems that it can improve on its own.

[Mac0411]

Very interesting article and video - thank you for the links  Interesting that it is an infection and not auto-immune.  I will pass that on to my consultant - can't harm!  I have been on antibiotics for some time so maybe I'm not a good subject (or maybe I'm on the wrong antibiotics).  It took a while for me to get on steroids for the EN because my biopsy wound was weeping so much that I think they did not want to hinder it's recovery so it was the most painful thing for me.  The IGM was bearable until the abscess started to appear.

[Mac0411]

Thanks for your response.  I didn't realise that mastectomies were used as part of the treatment but it is useful to know that it migh be an option.

[kuulei04]

Here is his case study.  He treated all women in 6 weeks successfully with no reoccurrence

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3706113/?report=classic

Here is the video:  please check it out

http://ecancer.org/video/2177/treatment-of-granulomatous-mastitis.php

[kuulei04]

I too had Erythema Nodosum!  It was painful to walk and I had about 7 lumps on my 2 legs.  I was put on steroids for the EN and the pain went away immediately.  I did a 6 week course for that and felt fine.  I don't like the side effects of prednisone either.  

At some point I stopped taking antibiotics.  And since then I've been healing naturally, taking curcumin, changed my diet (follow Paleo diet now) and I'm doing acupuncture. My abscesses have closed and shrunk and it have no pain.  I evenly even started wearing regular bras again.  I've had this since December 24, 2012 (this past December).

Someone recently posted a video of a doctor who believes this is an infection, not an autoimmune disease.  He has successfully treated 20 patients with antibiotics.  Problem is, patients allergic to penicillin were not included in his study.  I believe this is because the antibiotics he uses are forms of penicillin.  I will post the info because I think he is on to something.  I hope more people read the article.  I personally was allergic to penicillin as a child so that's why I haven't been put on that medication.  

I also noticed that as soon as I stray of my diet, abscesses start to flare.  I don't think it's related to hormones but possibly triggered by something we eat.  Possibly wheat (gluten) products.  Gluten causes a lot of problems for people.  

[ruostentatious]

Various treatments work for different cases, or so it seems. In my personal experience, Prednisone just tames down the swelling and doesn't actually knock down the size of an abscess per say. The best thing that has worked for me is having a partial mastectomy. I'm having my second partial (in the other breast) later this month... Good luck to you!