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granulomatous mastitis User Group
cyst
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
246 members
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cyst

I now have a cyst or abscess close or at my armpit which was discovered via ultrasound on Tuesday.  I have been complaining of discomfort there for months.  Has anyone else experienced problems in the same location?  
   5 abscess drained during the week;   E.R, doctor called the woundcare "Specialist" who now wants to see me on Monday.  Funny that he was content to see me in "7 Weeks" when it was red, swollen and painful a week ago.  
  My family doctor has sent in the referal (I hope);  I am waiting to hear back from Toronto.
6 Comments
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Hi Jackpat:

Really sorry to read all of this - sounds like tough stuff.

I think you really need to be seen in Toronto, sounds very much like the disease is managing your doctors.  I think you should get doctors that manage the disease.

Thinking of you and hoping for some relief for you soon,

Jo
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Three to four weeks ago I discovered two new abcesses. One pretty much under the arm pit. The other right next to the sternum. I thought "my...things are really moving to the fringes." The sternum one was really in my way. I called to go in and have them seen. I waited 4 days for the apt. and they didn't grow too much during the wait. She was swamped that day, so they were going to send me to the clinic next door to have them drained. I could see my whole day evaporating...so right then and there I decided it was time to give prednisone another shot.
I am on 30 instead of 20 mg. After two weeks and a few days I am noticing some improvement. Even the shape of my breast is improving. At my check-up yesterday we decided to leave me on it for a while...until I get in the Rheumatologist.
I am having a better experience this time. I think because I ditched the anti-biotics. I also take pro-biotics. I also have really stepped up the walking and have been on the anti-inflamatory diet long enough that I am stronger. I haven't gained a lot of weight...but food is definately tasting WONDERFUL. So the weight is bound to start climbing soon. Anyway. You asked...and yes...the one in my armpit is still there. Getting smaller, but still there.
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Hello Ladies:
   Thank you very much for the support;  Sorry to hear that you also had one under the arm and near the sternum.   I had one on top of the sternum which surprised me because there isn't much fat there.  I had that abscess removed when I had my right mastectomy.
   I am so relunctant to go on predisone as I am pre-diabetic.
I keep reading referances to Rheumatologists;  I have been tested by a Rheumatologist who could not find any signs of a compromised immune system.  Has anyone else had this?  Sometimes,  I am more perplexed when I read about this disease.
  Everyday that goes by without a call from Toronto is a disappointment but,  it's been four years so,  I guess I can wait another few weeks.
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Jackpat:  I am going to try to get things going in Toronto for you.  I will call them Monday and keep at them until you get an urgent appointment.  You are desperately in need of some excellent medical care, and I know this is Canada, and we are all very aware of the crap wait times, yes it is free, but it has certainly downgraded in care these past 20 years,  I worry about its future, especially as I see myself involved with it moving forward.

Anyway, think I can help, and going to try anyway.

As far as testing, I have had just about everything, strangely my immune markers, even when I had a draining breast and bad GM and an inflamed spine, have always been normal.  Just had a test that showed low B12, but that has been it.  My doctors find it strange.

That said, there is a group of diseases which fall into 'Seronegative spondyloarthropathies', a lot of people with HLA B27 positivity (an immune globulent) which a good portion of the Northern Europeans have, but which only 6% present with disease.  So there is assumed to be a causative factors, most common theory is that something comes in to your body which triggers your immune system (food posioning, bacteria), and your cells become active, because of the HLA B27 marker you have, there is a theory of 'molecular mimicry', where your immune cells mistake the HLA B27 as something to keep attacking as they look like the bacteria....an immune condition is setup in your body, with inflammation (the byproduct of immune function) as a result.

I am HLA B27 positive, it can cause a lot of arthritises - particulary of the spine, such as ankylosing spondylitis, which is what they thought I had for a long time.

We need AWARENESS, more than anything, a connection in the medical community, one measly researcher to pull our stories together (or maybe I can do that), collect some data from what is very likely the largest pool of current cases in the world.  And see if we can't produce a trend or two.

I am also hoping to make a video and post it, I was hoping ultimately to have some pictures or video clips from members to make the video - is anyone interested?  I want it informational, and to inspire people to get involved.

I don't know what is involved with starting your own non-profit, but I wanted to look in to it.  That way we could do fundraisers and maybe hire a med student researcher part-time.  I am sure I could get donations...I am sure you all could too,

Let's put our many brains and resources to work for us.

Anyone know anyone who is good in Wordpress, I just renewed the licenses for granulomatousmastitis.com and .org and want to create a much more compelling site for our website, also to improve the tags so we rank higher.

Pandora:

Good to hear from you.  It is hard to read you entries because I can imagine the pain and stress involved.

I had a very similar experience.  At first I did not have good doctors, no one was talking to me, there were only dated limited medical studies to reference.

I must say Prednisone, while I hated it, is what settled my breast and body down.  I love the feeling of loss of inflammation I get system wide.  That said it made me bloated and i always felt a little weird, but when I was on it I was ok, lots of energy, body healing.  When I was weaned, which was done incorrectly by an uncaring rheumatologist who thought I was hysterical, I had a bad experience with anxiety.  I ended up having to wean for months, very slowly.

Anyway, I personally say give the Prednisone a shot, I did not experience a lot of the side effects that people complain of, I was on a moderate dose, same as you.  There are books about how to handle the changes in your system.  I did try to have a healthy lifestyle to help with healing.  I think staying positive is the most important.  Hard when you are in pain and uncertainty, but it does help.

My one piece of advice is watch when you are going on and going off the Prednisone, that is when you own adrernal gland will be involved and can get tricky.  Get a rhematologist to do it for sure.

You sound very strong always and I know you have a large strong support network.

Thinking of you.

Other members - please participate in starting to build an actual presence or community for this disease.  No one else is doing it.  We should be compelled.

Jo
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Thank you very much Jo,  any help would be greatly appreciated.   You sound as though you know a lot of the staff at WCH.   I am taking my mom to the doctor's on Tuesday and will check to be sure that his staff put the referral and all possible information together.
   I know that it is important to maintain records of all pertinent info...dates of abcesses, ultrasounds, aspirations, surgeries,  doc and hospital visits, etc.  Unfortunately,  the past year or so,  I became lax in that department...it simply seemed too daunting when I looked back at it.
  We all need to keep records for the better understanding of this disease.   From time to time,  I was having someone take photos of my breasts, wounds, etc. at one time;  I don't believe that I have those any longer.   I would be willling to put some information on facebook; and ask friends to repost the information and the fact that we are trying to get something going.    Although, I am on a disability,  I would be willing to make a financial donation to get something going and/or to maintain your website.  
   Thank you Jo.
   Patricia Jackson,  Essex, Ontario
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Thanks for the encouraging words and advise about prednisone. I was so opposed to it. I certainly did not mean to imply that others should take it. I am glad that I don't have multiple issues that complicate my situation. I certainly need to read up on the drug and my adrenal glands. I am hopeing the Rheumatologist will be able to help educate me as well. I am not one to read a lot. I do much better when people can explain things or diagram them visually. This is very scarey. I want it fixed...
This is probably the first time in my whole life I have been eating right and taking supplements faithfully. The holiday weekend definately de-railed that. Tomorrow is another day. I was sooo hopeing that the diet etc...would be an easy solution. Alas...It is an important piece...but not the answer.
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