idiopatic granulomatous mastitis

[neisha31]

Does breast feeding have any effect on the use of steriods to treat granulomatous mastitis?  I have been on steriods 60mg per day for the last eight weeks to treat my condition but so far have not seen any definite results can you tell from your experience how long it usually takes for this condition to resolve and under what circumstances?  My baby is now three months old and I am breast feeding as well as formula supplementing do you think it would be better to formula feed  only and continue treatment and see if that changes the effect of the steriods.  Any suggestions will be graetly appreciated.


This discussion is related to Idiopathic granulomatous mastitis.

[tanya34]

Hi
I would really like to know how you are progressing.  I have had granulomatous mastitis since November 08.  My consultant is treating me with antibiotics on and off to control abscesses.  I am being treated conservatively.  
I have not noticed any improvement in my condition.
I am also a Doctor and am wondering wether TB could be a possible cause of this disease.  I have read of some cases of patients treated successfully with TB medication, even after a negative test for TB.

Dharini

[rgcribbs]

I have recently been diagnosed with idiopathic granulomatous mastitis as well.  My situation began back in June of this year and the diagnosis was made towards the end of September.  After doing some research of my own and by having a breast doctor who has been very committed to finding any and all answers for me regarding this disease I have made a very difficult decision to have a double mastectomy with reconstructive surgery.  All of the studies that I was able to find indicated that the treatment has less than a 50% success rate while the removal of the breast(s) is very close to 100%.   My procedure has not yet been scheduled, but I feel very confident in the decision that I have made.  Until the procedure I am taking 20mg of Prednisone each day to keep things from progressing.  It would be great to share and learn of the experience(s) of others who have had to deal with this horrible disease.  

[catelliot]

I've been suffering from Idiopathic granulomatous mastitis for a little over 2 years (finally diagnosed 10 months ago) and have had a large open wound that won't heal since July of 2006 that resulted from a biopsy surgery.  My doctors and I decided against steroid treatment due to lack of evidence of effectiveness (in research studies only 30-50% see "improvement" with steroids, while 40-60% seem to see "improvement" from doing nothing), bad side effects, and risk of relapse/worsening if you stop taking them.  I did have a second surgery, but they couldn't do a full resection and still get a reasonable cosmetic result.  Unfortunately, my wound reopened and enlarged following the second surgery and they just found an area that looks like IGM in my other breast.

Can you shed any light on what the research studies mean by "improvement"?  One could say that my condition is improved because the MRI shows fewer areas of inflamation and the wound that used to be 100% open is now about 80% healed over with scar tissue.  However, the fact remains that I'm still dealing with a large open wound; so this level of "improvement" really doesn't get me anywhere.  I'm wondering if anyone actually fully heals from this condition.

[BhumikaMD]

Hi,

Complete resection is removal of the lesion in whole or completely.

What do your specialsit advise?

How are you doing now?

What is the further paln of managemnet?

Keep us posted.

Regards.

[Noelle04]

What is exactly is a complete resection?  I was diagnosed with Granulomatous Mastitis in January after a nearly seven month struggle.  My last surgery was three weeks ago, and I have a 14 cm open wound that is going to leave me severely disfigured.  To date, the condition has not improved.  

[BhumikaMD]

Hi,

Good to know that you are doing well.

It would be great if you could keep us posted on how you are doing.

Let us know if you have any other doubts.

Regards.

[neisha31]

Thanks for your response.  I saw my doctor today we decided to reduce the dose of the steriods since there has been no significant change to the size of the legion with the higher dose of the steriods.  The next step would be to decide when to opt for surgery.  I am hoping that I will not have to go for surgery.  I am now on 50mg of the steriods.  If there is any other known treatment for this disease I will really be interested in it and also if there is any one who has been through this or is going through this then it would be good to compare experiences.

[BhumikaMD]

Hi,
Granulomatous mastitis is a benign inflammatory breast disease of unknown origin that usually affects young women of childbearing age.

The recommended treatment for granulomatous mastitis is complete resection or open biopsy with corticosteroid therapy.

The chances of recurrence are high and so a regular follow up is essential.

You could continue breast feeding your child - but you need to reconfirm this with your OBG and pediatrician.

Let us know if you have any other doubts and keep us posted on how you are doing.

Goodluck.