What has helped?

[Miriamkh]

For all of us who have struggled with GM....what has helped your condition? what didn't help?

I'll start. 1) I think time helped. Just the passage of months seems to have caused my flare-ups to go down. I am at the point now where I still have some mass inside but no major abscesses. One small area still is inflamed but leaked only a tiny bit.
2) I am on alternative, herbal remedies, mostly to boost my immune system. I think they are helping.

[lillkagri]

Hello again

And thanks for your answer. Its nice to have someone else who got GM since there is no one around me who has the same. I guess its the same for u in Canada?

The ultrasound doc was talking about it, but they cant find any fluid abcec, its just a very hard and  huge mass,  They hope that it would change, but so far they cant to anything about it. A bit frustrating since its growing every week and the pressure is at the moment not very good to live with.  Im on sickpay  at the moment because of the GM, first it was nice to go to coffeshops and c some friends even though it hurted .. but now the only place I want to be is in my bed. Miss go skiing, jogging, and all the other things I loved to do when I was well. My life just turned up side down after one day and its very hard ... I guess its like this for all of us with GM.

Do you know if there is some literature about this others problems in the body when woman has GM? It would be nice to give to the doc since she dont belive me.. She thinks its still in my head and its a bit frustrating. Beacuse she says the pains are only in the breast but I feel sick all over.  

Did u have cortison treatment? Im on it now... not sure I like it. And its day 3 now and it is still not working.

Have a nice day.

Best wishes from Norway.

[JoJo45]

I am based in Canada.  But this diagnosis is very rare everywhere, only hundreds of cases worldwide, probably more because it is most often mistaken for inflammatory breast cancer and treated as such.  I think only now are pathologists and breast centres, rheaumatologists becoming aware of this disease.

Myself I have had three episodes since 2007, but don't despair from that - many others only have this once and it goes away, some however do have very serious cases.  So we will just hope and pray yours is going to heal well and go away and not come back!

I myself didn't try topical pain treatment like you have described - but others may have.

I have other inflammatory problems in my body and many others with GM do too, so no, not in your head.

Has your doctor suggested trying to drain your mass through a guided ultrasound by a radiologist.  That is what gave me the most relief.  I am not sure if your case is the same, but I would think it is worth asking your doctor.  They just insert a large needle and drain the abcess (if yours is fluid).

Hang in there Jo -

[lillkagri]

Hello Jo ! :-)

So nice to hear from you. So you are doing better now? How long have you bin ill? I am so new, and I head dont want to belive that this illness will stay in my body for a long time. Its difficult to acsept it. Good to hear that there is some sunshine and good endings for ppl who has GM. That gives me hope ! :-)
My doc in Norway is very nice to me I think, but I wish there was more answer for a good cure. Are you from US? Do you know if there is many in the US who got GM?
I
had to go to the hospital today, the pain is getting worse and the mass is getting huger every day.. but today I got new painkillers and a nurse gave som skincream they give to kids before they are going to take their blood test so it woundt hurt them. The nurse was just wondering if that could help me, and it did very mutch ! :-) Its just drugging and coolig down the skin but it was a relif today for me. Have anyone else tryed it?   Offcourse it wount take the pain away as I want, but a tiny bit, and that is good enough for me :-)

Do any of you with GM have problems with hurting in your bones? Its like having a flue I guess. My arms, knees, fingers and all over are freezing and its almost Im having a feever. My doc think its in my head but im not so sure. Its reallity for me.

I was on two antibiotica cures, but Im so allergic to lods of antibiotics and pencelin so there are not many options.  The antibiotic did not respond to my GM. Have u tryed it?

I also got worse after biopsy, my doc said today that i prob had a second infection after the biosy. They took a bacteria test today.

Im hoping everybody get well and that there will b a good cure !

Best wishes from Lill :-)

[JoJo45]

Hi

I am so glad you are writing here.  Remember it will get better.  To answer some of your questions from my experience:

I too had horrible pain.  The core biopsy I had also caused severe pain, I am not sure if this is normal, but when you have inflammation like with IGM, I think anything is magnified.  I now take pain killers when I have a flare, but for months I just had burning radiating pain in my breast and arm.  So this seems to be normal for this disease.  

Prednisone is notorious for side effects...but it is also one of the most effective anti-inflammatories they have and it is often seen as the second line of action against IGM, after antibiotic.  Have you tried antbiotic, I did find some relief from strong antibiotic - and I know other members have had this treatment as well.

I always found pain relief after my breast started to drain...but it sounds like yours is not behaving that way for now.

Surgery (excision) is very controversial for this disease, some think the tissue needs to be removed, others feel that any surgery will just aggravate what they think is an auto-immune, inflammatory response by your body anyway and there are often complications with poor healing.

I hope you can hang in there - I can understand your pain, many of us here, just wanted our breast taken off to relieve the pain and anxiety of the disease -- but you will also read that for many of us, we were lucky enough to seemingly have the disease go away and to not have our breasts removed.

So you are not alone, you are going through the worst time, but this disease does seem to 'burn out' for some and that is what I am hoping for you.

Please make sure you read everything you can, and get a second medical opinion, if you are able to there, before you have any drastic surgery.

Thinking of you and sending good wishes.

Jo

[lillkagri]

My name is Lill, 28 year old female from Norway. Im new in this forum and I am so happy that we have this forum. I come form Norway and we dont have many cases with IGM .. its so difficult because the docktors are not sure what to do.
I wok up 1st february with a huge breast mass ( hurted a bit the nigth before I when to bed) and when straigth to my doctor, who passed me on the local hospital. I had to take ultrasound every day but the could not find any abcesses to drain out. Finaly after I got to a doc who wanted to take a biopsy of me and I got the diagnose IGM.
Now Im standing here with loads of questions. This pain is killing me some days. The last days it got worse and now I am on a 30 mg prednisone. I am very skeptic to the side affects, do know anything about this? I was suppse to take a surgery this monday to take away som parts of the infected breast but the doc changed here mind and would not do it because its wold be so many sideaffects after a surgery after .
Now, the pains are not very good to me.  To day I have bin in bed all day and I just want to operate the breast of. Strange what pains can du with a human.  Anywone who feels the same?
I will be so glad to hear from anyone !
Best wishes from Lill. Sorry if my english is not so good at the moment.

[Miriamkh]

Hang in there Amy- this is a really tough disease to live with. Our disease does have similarities to sarcoidosis, the main difference is ours is limited to the breast. However, I am not a medical doctor, so not an expert, so I am sure I could be wrong about lots of things. However, I have done lots of research within both medical medicine and alternative approaches....one thought that comes to mind about your case is that you have had a number of diseases that could be immune system or autoimmune related- eczema, and IBS. Those are both inflammatory to some extent, as is GM. I have a number of autoimmune and immune issues as well. If we look at the body holistically, and not just as separate organs and parts, there is something going on there. I am on a regime of immune-boosting supplements, plus I see an integrative accupuncturist. I would suggest finding a good alternative practitioner, or several of them, and see what they can offer you. I sought advice from several alternative experts to figure out what to do.
Feel free to keep asking questions.....

Miriam

[JoJo45]

Hi Amy - I think it does some times just burn out and go away.  I just had my third bout and it was much less worse then my previous two.  there is hope, and there is hope without staying on Prednisone - I personally only took it twice for short rounds as I had bad side effects.

Your rheaumotologist sounds ignorant and I have to say I went through two before finding someone, who although he has not seen this disease before, was at least open-minded.

Is there anyway you can find another rheumatologist who might be more open-minded or sympathetic?

Hang in there - Jo

[Amy669]

I have just joined this group.  I have had GM since July 2009 but it was only recognized as this in October 2009.  Prior to that was being treated with cipro and nothing was happening, in fact I think I got worse.  I am 52 and so far have solved all the major medical problems I have had in my life.  I had polycystic ovarian syndrome and went on to have 3 children.  I had irritable bowel syndrome and basically cured myself.  I had very hard-to-cure eczema and cured myself.  Now I see a breast surgeon and a rheumatologist for GM.  The rheumatologist is calling it sarcoidosis, even though all my tests came back negative for this.  I started on 40 mg Prednisone and in 4 1/2 months worked my way down to 10 mg.  The wounds created by the surgeon to drain the boils would never have healed without the Prednisone.  There are dramatic scars - not sure if they'll go away.  Now I have a new boil just next to the nipple.  This would be my fourth abscess.  I would just like to have some reason to believe that eventually this might go away.  I don't do that badly on Prednisone.  I gained only small amount of weight and I keep very active and usually feel good.  My surgeon told me recently that one can't stay on Prednisone for years, it's just too dangerous. Better to have a mastectomy.  Miriamkh: could you tell me which herbs you were talking about?
I read the book "Coping with Prednisone."  In it, the author maintains that she was told to stop taking all her supplements while on Prednisone, just in case one of them was associated somehow with her disease.  I decided to keep taking my usual supplements.  Not sure if this is what others would have done.  

[Miriamkh]

I really do think that the herbs I am taking are helping. If you believe in alternative medicine and taking a holistic approach, there are ways to avoid methotrexate. I say that because I am a bit scared of methotrexate- essentially it's chemotherapy- it is toxic to lots of other organs and can cause cancer later in life. It is especially harmful to the liver. Several of the holistic practitioners I have worked with have thought that the GM may be linked to a weak liver- a liver that is not able to process toxins as well as it should. So I am scared to damage my liver further. For me it would be a last resort- I am going to try everything else first. And I do think my regime of herbs and acupuncture has been working.
If your breast is active and you want to relieve some inflammation, another thing that has been helping me is castor oil packs. get the best quality castor oil you can find. Then put 1 tablespoon or more on a piece of cotton or linen. Place on breast, then place a heating pad on top (I wrap the heating pad in a plastic bag so it doesn't absorb the castor oil) and keep in one area of the breast- especially one that is erupting or painful- for at least 15 minutes. The longer the better. This has always helped me. Sometimes it actually opens up the skin and some fluid leaks out- but then afterwards my breast feels better. If what I am saying sounds crazy....we have a crazy disease! And no one really knows what works.

[JoJo45]

I am really sorry to hear your breast  is active right now.  One of the things to remember I think, is that for some people this disease does go away and does not become chronic.  And we can hope that will be the case for you.  There is some hope in that.  I very much understand your feeling of just wanting to be done with it, and others may think that is dramatic, but I understand completely.

While mine has come back twice...each time it has been less 'powerful', I feel it may be burning itself out...I am trying to hold on to that thought.

Prednisone itself is enough to try to manage, so my thoughts are with you...it made me very anxious and upset emotionally, really upset my usual coping skills.  

Wishing you well and please post your progress or just anytime you need a friendly ear or some support.  You are going through a lot right now.

Jo

[Mzbowtie]

This is my initial diagnosis...which began at the end of July 2009.  I have only been treated with varying antibiotics, which did not work, and Prednisone.  It has responded very well at 60 mg but as soon as I begin to taper off the symptoms start coming back.  The side effects of the Prednisone are awful.  I am currently on a two week course of 60 and then another two week course of 40.  The breast surgeon says if this does not do it then we will try Methotrexate.  The only success I can say at this point towards any improvement is when I am on the 60 mg but I cant function normally at that level.  So, it is not a long term solution.  My surgeon in Tucson, Arizona also does not want to excise due to the size of it and that it would take the majority of my left breast.  If I knew it would not come back in any other tissue other than breast tissue I would elect to remove both breasts and be done with it.  The surgeon says I am extreme but I don't.  I don't want to live in pain.  I want to be able to take care of my daughter for many years to come without having to be exhausted from steroids.  I want to know what is going on with my body.  My breasts don't define who I am.  I am only discouraged by some of the testimonials on this website that say it comes back in other tissue.  Seems like I would elect for surgery only to have it come back again.

[Miriamkh]

When my inflammation was really bad, around August/September, my surgeon did talk of excision, but it would have been a very large area (half my breast). It sounds like you have doctors in Toronto that at least know of this disease. I am in Philadelphia, Pennsylvania, which has great medical centers, yet have only found a couple doctors who have treated GM, an infectious disease doctor and a breast surgeon. And it took me some time to find them. I am not sure excision is the answer- you could have a part of your breast removed and then it could come back in some other part- that would be my fear.
I have lower back pain as well- also recurrent neck and shoulder pain. I haven't done any investigating of this other than to see a chiropractor. Maybe I should.
I also have Hashimoto's Thyroiditis, an auto-immune form of hypothyroidism. The rheumatologist I saw didn't see any connection but it must all be connected somehow. I wish we had some answers.
I have been hopeful that this will go away, that I am healing. But your story, as well as others', is making me concerned that this is more chronic than I realized. Are there women out there for whom it has totally gone away? I hope others find our group so everyone can share their experiences.

[JoJo45]

I first had a huge mass in my upper left quadrant of my left breast.  I have had severely fibrocystic breasts for years, so thought, just another cyst, but it became huge very quickly, nipple inversion, red, hot, I didn't feel well, etc. so went in to the breast clinic and after an initial diagnosis of Inflammatory Breast Cancer...and much testing, core biopsy, etc., they diagnosed me with IGM.  It took me at least nine months to get over this first bout, I had weird radiant pain down my left arm, and back, etc...even up in to my face.  Anyway finally went on prednisone because I felt I needed to settle things down.  ( I live in Toronto, Ontario and the doctors here all seem to be anti-excision in any way.  They believe in corticosteriod as the treatment....believe that any surgical intervention will just provoke what they consider to be an infllammatory, auto-immune process). Anyway I had horrible side-effects from the prednisone, although it did settle my body down somewhat, I had to wean off slowly for months, and at no time felt that it had cured me.  But the mass seemed to have shrunk and I hoped it would go away.

I then noticed another area a few months later, this time around my nipple and started to have drainage and pain from this site.  I treated this conservatively and it seemed to be somewhat relieved by draining and eventually closed up after a couple of months (I am lucky in that my drain channel and site is small).  

I had this come back again last month - again, my breast just seemed to be changing, retracting tissue, nipple, etc. discoloration and I had two drainings and then the same channel opened again, drained for a few weeks and now has closed.

I have a complicating issue in that I have low back pain of some years that is just now being investigated and I think they are thinking spinal infection at this point. In any case, the rheumy does not want to go near me with any anti-inflammies until he figures out what is in my back.  I just had a bone scan last week, with really heavy uptake just in my low back region.  Will find out what that means this week.

So, my own feeling is, and has been, that I have been sick since November 2007.  This infection or whatever it is has never left my body.  I call them bouts when I can see marked changes in my breast followed by infection draining.  But I think that really, this should have been excised to begin with...I am really now second-guessing treating this so conservatively.  I believe the 'core' cells or whatever are still in my breast.

You have obviously had a serious case...I don't know what to say.  I am really sorry to hear because I can imagine the pain and uncertainty, especially being preganant.

Having something in your body that you don't know how to manage is really wearing emotionally,

[Miriamkh]

Hi JoJo,

When you say you have had three bouts, do you mean separate episodes (like months or years apart)? I started with this disease in March 2009 and am still recovering, I see it as one continuous bout really, with lots of flare-ups during it. I guess I will consider it to be "over" only when I feel my breast has healed.
Mine has drained spontaneously on numerous occasions. They feel kind of horrific when there is a lot of draining. I have had two incision/drainages as well (surgery) while I was pregnant before I was diagnosed and they thought it was infectious mastitis/abscesses.
I did go on prednisone for 4-5 months at the end of my pregnancy and really hated it. It helped at the high dose (60 mg) but I decreased as soon as I could. When I was totally off it I had a huge, scary flare-up with lots of leakage, but since then I have slowly been getting better. I am also still breastfeeding. Not sure if this contributes in any way.
I have had the surgeon do some drainages when it was bad, but they were not ultrasound-guided...it was pretty obvious where the pus-filled area was.
I wish there was more research and information on this disease, I feel we are so in the dark.

[JoJo45]

Hi Miriamkh:

I have had three bouts.  Mine presents with much fluid and so I have drainings which give immediate relief.  Generally I will feel a mass developing, then feel sick all over, then realize oh no...anyway I will then have an ultrasound guided draining..sometimes will need daily.  Unfortunately I have also twice had my breast open up to drain spontaneously  I tried prednisone (very reluctantly) --frankly I was desperate.  It did seem to calm things down somewhat but I have had recurrences since.  So like you I have found that while I have had three flares since the first mass, this last was the least troublesome.  I have not treated with any drugs.  I have read lately that there has been some success with methotrexate only, and that would be my approach if I should need to...one of the hardest issues for me with this disease as it will sometimes go away without any intravention and not recur, others have treated very aggresively...and have recurrence...hard to know what to do.