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Treatment with Methotrexate Alone - Have you Seen This Article?

http://www.jrheum.org/content/36/7/1559.full

I thought this was interesting - treating with methotrexate alone, no steroids....

I know it has side effects which can be quite serious, but so can prednisone, and prednisone did not work well for me, or from what I read, for many others.
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1551642 tn?1294351934
Thank you, Jo. I didn't see this thread before (nor realize that there were more pages of threads). This forum is so helpful to me & my husband as we try to navigate the next medical step.

I hope you start feeling better soon. Take care.
Margaret Ann
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1548207 tn?1303454180
Thanks jojo I appreciate u helping me find this thread.
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Hi - for the newer members I wanted to repost this as this thread has a lot of information on different experiences with the different drugs generally used to treat....methotrexate and prednisone.

Also just a note, if you scroll down through the first page of posts on this forum - there are another two pages of past forum posts available to you...by selecting the arrow or a page number, at the bottom of the first page.

I know if you are new, you probably have lots of questions, etc. - and there is a lot of patient information recorded here which will hopefully be of help.  A lot of the women that have previously recorded their treatment have finished treatment and I guess you could say 'moved on' from this disease, and are no longer regularly active on the forum.  It can be a pretty painful thing to keep in your consciousness daily...a relief when you have managed to make it not the priority after years, and in a number of cases, double mastectomy and reconstruction.  I guess what I am trying to say is that I have noticed this forum is of most help to women recently diagnosed, and possibly to connect and to share experiences with other women in the same stage of the process...but for historical, might be best to try to read the threads.  I am always available and I can probably point you in the right direction, if you let me know what info you would find most helpful as Red has done...

I am trying to do something more organized with the patient experience, make these sites better help all of you, but my health is not great unfortunately right now.

Red, let me know if you need more info on the drug treatments and outcomes.  I am also going to see if I can link some of the more recent published articles and the outcomes listed by treatment type.

Cheers to all,

Jo
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Hi Frankie -

sounds like you are healing up, which is fantastic!  thanks for sharing - I am so happy for both you and Miriam :)

remember that lots of patients have one bout, and never again - so maybe you don't need to worry anymore...if you are not having symptoms anymore, I would let it go and put in your past...except for maybe lining up a rheumy

this disease, for many different reasons, carries a huge emotional and mental burden...if you can leave it behind, you should (other than participating in info gathering to hopefully further the knowledge about this disease for those coming after) - that is my advice anyway

and so glad to hear you are doing just that...

Jo
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I feel so sad for everyone. I haven't forgotten your advice because I think about having Mastitis everyday.   I've been busy trying to balance my personal life, work, and  trying to be proactive about my health while I still feel good.

To give you a quick update: my breast surgeon removed the Mastitis in May '10, the inverted nipple returned to normal, and the incision is healing normally. My doctor referred me to a Rheumatologist who won't see me because she does not specialize in Mastitis so I'm on my own now. I'm in the process, of searching for a rheumatologist who is willing to take on my case. JoJo might be right that I might not have a reoccurrence but from what I learned from this forum and from experience,  I need to be my own advocate. Right?

Scary, that I almost went swimming in the river today, but my plans fell through.  After reading this forum, I'm glad I didn't.  I still feel vulnerable since my breast surgeon did not put me on any treatment. I think it was her way of dismissing me since she said that she didn't need to see me anymore.  In the meantime, the soreness has ceased. The doctor said that the hardness I do feel is scar tissue that forms after the surgery. I hope she's right.
In the meantime, I'll be revisiting this forum from time to time.

Thanks for sharing your thoughts and wisdom.  
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I have read that GM occurs bilaterally (both breasts) in 25% of known cases...

Jo
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Avatar universal
That is very sad to hear. I had a dream yesterday that I woke up with both breast infected.
Is there any study about getting GM in both breast? Is it "normal" to get in both? WLD also had GM in both breast so it seems there are more cases and probably more cases than we know. I sometimes think about how many GMs there is out here. There are probably many other who is not in this forum.
Hope that there is a quick recovery for you and that it will heal soon.

... I take the methotrexate once pr week now, on sundays. I feel very sick til thursdays.. and soon its sunday again. I hope that this will have an ending soon. For all of us.
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Hey Lill:

Glad to hear you are hopefully on the right track....your breast sounds so painful...really hope that stops soon...you deserve a break my friend.

I am having some not great changes and quite worried -- in both my IGM breast and other breast now.  Trying not to stress too much, but really hard.

I hope to have some answers from testing next week.

JoJo
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Hello ! :-)

How are you all doing?

About the prednisone, I took it just for two weeks.. I guess that was not the thing for me. I felt terrible and my head started to mess with me. I was so afraid of gaining weigth after a long history with eating disorders and the docs understood me. Thats my choise.

On second week with metho now, the breast is still very open and huge.. but it will take a while (if) before it starts to work.  Im bin having influenza symptoms the last days but I feel OK. Im a bit upset why I didnt start on metho earlyer but I guess thats the way it is now, and the docs in my country Norway does not know mutch about GM. But I have to trust them and thinking that I am in good hands.

Hope that everybody is doing a bit better than last time I wrote.

Lill.
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Avatar universal
In answer to JoJo's question, I had quite a few episodes of bacterial mastitis when breast feeding but nothing then till the GM a couple years later and nothing since.

Glad that I haven't experienced the "creepy" feeling that JoJo and Amy have coming off prednisone- its always a bit weird when you realise that your body or what you have put in it is messing with your mind too! - don't like it one bit and you guys really have my sympathy.  

For me it was the first week on  prednisone that had me climbing the walls, rather than the tailing off. I wasn't on it for very long, something like six weeks in all (for asthma/chest infection rather than GM) , so perhaps it's the cummulative effect of using it longer term that makes coming off so hard.  

I always used to like to think that it was up to me to decide what and how I did things, but the more that I find out how hormones and drugs affect my reacations and wellbeing, the more I realise that's just an illusion. I suppose that's the biggest thing that most of us who are used to being generally well have to come to terms with when faced with any significant health problem -  we have come to expect that everything can be fixed somehow. Not that I'm yearning for the bad old days when getting to 40 was considered an achievement or anything!

Sorry for the ramble - definitely not as eloquent as JoJos!

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Avatar universal
Hi - I think that Amy is saying she had developed bacterial mastitis in the breasts, and then somehow this evolved in to GM, perhaps from her body trying to fight the regular infections...I would be interested to know if others have bacterial mastitis before they have GM - whether the immune reaction to the bacteria is in fact what causes the GM, which most of us have had cultured for everything known to man (literally), and it is not bacterial...etc.,

I have read that up to 90% + of women have breast cysts on autopsy...severe fibrocystic breast disease is another thing and I do agree with Amy that very likely this puzzle will end up being about hormonal/prolactin/autoimmue interactions, which is why most women experience post breast-feeding.

I really hope one day soon someone cares enough to put their scientific mind to this and we can all laugh about the good old days when GM was treated with steroids and chemotherapy and women can stop suffering and trying to save their own breasts.

I had the same creepy feeling Amy when tapering from Prednisone - really weird...can only imagine what the chemicals in your brain and body are doing, but it does straighten out...for me took quite a few months, but managed.

JoJo
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It had been my plan before swimming to put waterproof bandaids over my nipples.  I had purchased the bandaids, I was all set, and then I didn't follow through.  I recently went back in the water with the bandaids.  The new infection in the second breast is not getting worse, but it is not completely gone either.  Pain, hotness, and redness are gone, but there are hard little nodules around the top of the nipple that were not there before the infection.
Lill: the methotrexate made me feel pretty sick on the one day of the week I had to take it.  But on the rest of the days of the week I was pretty much OK.
I have been putting progesterone cream on both breasts in hopes that it may counteract any too-high estrogen situation in there.  It seems to have a positive effect.  Also, alternatively, I smear iosol iodine on both breasts, over the problem areas. I read that it has an anti-estrogen effect also. It also seems to have a positive effect. I was looking at websites, not about GM, but about breast cysts in general.  Fibrocystic breast disease, or whatever it's called.  They discuss the relationship of estrogen to breast cysts.  I was wondering whether following the prescriptions they give for avoiding breast cysts could have any effect on the GM?  My caffeine intake is not very high, but I am not keen on cutting it down any further.
I swab out the inverted nipples (one I already had, and one was caused by GM) with colloidal silver a couple of times a day. (Interesting: I had horrible pimples on my chest from the prednisone which completely cleared up when I switched from standard pimple cream to application of watered-down colloidal silver).
Miriam advised me to take herbal supplements to help with the withdrawal of the prednisone.  Yes, I do take stuff: pantethene and this other thing called adrenal support.  I can't tell if they are helping. Thanks for the story about what happened when you reduced the prednisone.  I feel fine in the early part of the day and then I begin to feel really creepy in the afternoon.  Hard to describe the feeling of unwellness.
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Thanks for writing Jojo. You brought tears to my eyes to .

Im on metho now, it will take a while before its start working they said.. not mutch new that has happened but feels like im starting to get a cold.
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That was not a ramble, it was written so well and eloquently you brought tears to my eyes.

Miriam
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You know what really gets me?

The fact that we are grown women suffering with this disease enough as it is, with symptoms that are horrific and due to having no real clue as to what causes this, we are afraid to even swim on a holiday with our families...

When there are so many unknowns it is easy to blame yourself, or most recent actions for any activity in the breast -

When I first had this diagnosis, not only was I suffering physically, but I somehow felt responsible for my illness (this is the danger of our embracing the new age movement I think and the idea that we can all control our health now - there has been, and always will be illness - how you deal with it is the only part we have control over) and I felt somehow isolated from others who were healthy.  I don't know if women who are diagnosed with breast cancer also feel this.  I do know that having a serious illness is a journey of many different stages, and that with our disease, having no one in control, no one to say this is what this is and this is what will treat this - is the hardest part.  It has made me aware that others in the world also suffering from orphan, rare diseases, must be going through this process too.  To me this is just as hard, or harder to deal with then the physical experience.

Personally I have been experiencing a process of trying to understanding my physicality and really what that does and does not mean to me, especially helpful when I am having extreme pain from my spine or breast...I am doing this through yoga and meditation.

Sorry for the ramble, I don't know if the pool set your breast off - but I do know that the constant stress of trying to control something that we know nothing about can be incredibly draining and it really upsets me that you have had to go through this Amy.

I too had my worst experience with Prednisone when weaning, so I agree with Miriam, now is a time to be easy on yourself.

I am wishing relief for you.

Jo
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Amy,

I was thinking about one other thing with you tapering down prednisone and getting the infection in the other breast. When I weaned off prednisone, my breast got much worse for 3-4 weeks, it started leaking like crazy and this big, gaping area (I guess the size of a half-dollar) opened up and just would not heal for a while (sorry if this is graphic). And from the big area a lot of fluid leaked. But I kept decreasing my dose, and then slowly I started healing. It was a really difficult time for me because I kept second-guessing myself, thinking I should take more prednisone, but something was telling me that the fluid needed to come out. I think the prednisone was suppressing something, and once I lowered my dose, my breast needed to get stuff out to start healing. I am wondering if your second breast had a reaction as you lower your dose?
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I took a swim in Turkey when I was on a summerhollyday. I didnt swim in the pool but I tryed to take a bath in the sea and It was ok with salt water... had some waterproof bandage on it but the it was a bit to cold for it so it started to hurt a bit. But I guess salt-water is good for everybody I guess.
Scary to hear about the second breast. What a nigthmare ! Wish u the best and always thinking about you.
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Lill, I am glad you are starting the methotrexate, it may be your chance to save your breast. Amy, you got me worried a little; my family just joined our pool club and I have gone a couple times. I hope the chlorine is ok for my breasts. I am glad yours cleared up quickly though and that you are doing better.
As you taper down your prednisone, you may want to consider taking something herbal to help your adrenal glands function again, and also something for your immune system. I think this is what really helped me when I weaned off the prednisone.

Miriam
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Great to hear you are starting your treatment, Lill.  I hope it works out.  Yes, I have an interesting update.  Almost a week ago, I went swimming for the first time in almost a year (I have not been swimming because of this disease).  I swam in our local public pool.  Next day, I developed mastitis in the OTHER breast.  Small hard cysts, pain, the area around the nipple hot and red.  I didn't panic, but I did pray that this would not develop into the full-blown disease like the right breast a year earlier.  (Before I got this disease, I did have breast infections near the nipple, about 3 or 4 of them, that went away entirely in about 4-5 days).  After 5 days, this new infection seems to be getting better on its own.  I had my appointment with the rheumatologist yesterday and told him the whole story.  The original breast with the disease is doing very well.  I was scared that he would increase my prednisone dose because of the new infection, but that is not what happened.  We are tapering over a 2-month period from 20 to 7.5 mg prednisone, and he decreased the methotrexate from 8 pills/day, once a week to 4 pills.  If there is a flare up in either breast, we will do a biopsy and send the sample to a special lab where can test for hard to find organisms that might be in pool water or lake water.  I asked him whether all those weeks on cipro (antibiotic) last summer could possible not have killed everything and he said it was possible that something could still be in there that the cipro might not have killed.  (I don't understand how something could be in water and I get the disease twice and all the other women swimming in these pools and lakes do not get the disease.  This just doesn't seem likely to me.  Just as was said a few days ago in another discussion, I also think this is basically a hormonal/autoimmune thing.)
Has there beem any improvement in your breast so far?  Keep us posted!
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Im starting on methotrexate now, no prednisone.. Im quite happy about trying it and I wonder how it will go. Will keep u updated if you are intereseted.
How are you doing Amy?
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Thanks for asking.  All is the same.  I am on 25 mg prednisone 8 pills/day, once/week of methotrexate.  Sometimes have have no side effects at all from the methotrexate.  The breast seems to be getting progressively better.  I did notice a change - it seemed like the surface of the skin was lumpier but not the deeper issue of the breast.  Basically, there is no underlying hardness in the breast at all now,  It looks like I was attacked by a tiger and the wound has a scar.  The breast is probably a bit smaller than it used to be.  I do sometimes get sensations in the breast, and when I do it really worries me.  The doctor asked me: is it pain?  And I had to say, no, it's not pain, it's like there's a conversation going on in the breast.  My next appointment with the rheumatologist is June 11.  I am hoping he'll reduce the prednisone.  I predict he'll say: take 20 prednisone and see me in 6 weeks.
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By the way Amy, how are you doing? Are you continuing to make progress with the methotrexate/prednisone combination?
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I'm glad you tried my method of a castor oil pack and it helped someone other than myself. I have to come clean, when I had inflamed areas on the surface, I would sometimes lance them myself as well, it would bring me relieft. It didn't even hurt to poke through the areas, the skin was so thin and damaged already.

Thanks for posting the article. I just read it, thanks. I had not read that one, I don't know how it escaped me, since it is from Jefferson University, which is in Philadelphia- the city that I have been getting treated in. Even more interesting, the surgeon in the article, Ann Robinson, is someone who I almost went to see, but she does not take insurance at all, so I hesitated. If I am ever unhappy with the surgeon I do still see every few months, maybe I'll go to her.

The picture is reminiscent of how my breast looked...although I did have horrible abscesses, and I think mine looked much, much worse.
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Here is an article about GM that has a picture of the diseased breast.  It is amazing how much this breast resembles mine when it was bad, although mine was worse in that the general shape of the breast was more distorted.

http://jdc.jefferson.edu/cgi/viewcontent.cgi?article=1029&context=surgeryfp

By the way, Miriam, I did try your castor oil and heating pad method about 2 months ago and it did just what you said it would.  It kind of brought the boil to a head.  It would not burst by itself, so I sterilized a sewing needle and did it myself.  The puncture was tiny and clean, the boil drained nicely, and I was on my way to healing right away.
(a half a year ago, I found all kinds of discussions on the web between women who probably had GM but didn't know it and didn't call it that.  One woman claimed that she "lanced herself."  I was horrified, but I never forgot that idea as a possibility.  And then I lived it.
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