To Jo and all:
You gave good advice to Lill. That sounded scary, didn't it? I am very glad your breast is stable - what did you do to bring this about? Are you taking anything?
I am doing well. I am starting my second week of 10 mg prednisone together with the lower dose of methotrexate. After this week I should be going to 7.5 mg prednisone for two weeks. Then I will see the rheumatologist. I have been swimming, not that often, with waterproof bandaids covering my nipples, but I may be kidding myself because the padding part of the bandaid is moist when I remove them (maybe that's better than dripping wet). Anyway, the good breast is basically back to normal. I get a few twinges of pain in the GM breast every once in a while. I worry, but I try to relax. My withdrawal symptoms from the prednisone are not as bad as they were in the beginning. My attitude is hopefulness combined with wariness and vigilance.
I think my mindset is the same as yours Amy. I know it is there but try to just do everything in my life to avoid inflammation - diet, exercise, yoga, meditation.
My disease is funny, and so I don't want my having had so many bouts to scare or discourage others.
I have never had children, never breastfed. Which is maybe why my disease is a bit different?
Mine seems linked to other areas in my body...I have also developed a site of major inflammation at the base of my spine, and had spinal biopsies, whole body bone scans, etc., to try to determine what it is, but no one knows, although they do think (my rheumatologist and the breast surgeons), that the two sites of inflammation are related.
Anyway my first bout was much like others here - very involved, large mass, which I treated with prednisone and many drainings. My inflammation likes to abcess and drain. I have one channel that it will do this through.
I really don't know what to do. I can feel this in my breast (and often accompanied by flares in my spine and just all over) - I get the pain twinges, like you describe or constant, severe pain if I have a collection, and my mass or scar tissue gets active, I don't know why - it moves around and goes up and down.
But my last three bouts, (the first was the worst and lasted a good year), the new bouts are all less complicated. I am hoping it is 'burning itself out' which apparently happens - a lot of cases self resolve.
If it flares again, I am going to go the methotrexate route, or perhaps I should be now.
I don't know - that is what I hate about this disease, maybe I should be treating it, but I don't know with what, or how it would affect the rest of my body and my spine inflammation - my pain there is severe and constant...how can we make these awful decisions with not enough info? That is what stresses me most.
I don't know what is going on.
I guess none of us really do.
I am curious how Lill and Twig are doing.
This is an update. We tapered the prednisone to 7.5 mg. I was doing great. Then 4 days before I went back to the rheumatologist, it started to get worse. I had some pain (only if I pressed in on it) and the lumps were more noticeable. When I saw the doctor, he confirmed that it was getting worse and predicted that if we lowered the dose of prednisone further (to 5 for one month followed by 2.5 for one month) I would develop some cysts filled with fluid that we could then biopsy again and send to a fancy lab! I went on the web and started reading about diets for breast cysts and autoimmune diets and compiled a list basic rules that I try to follow. Little meat, dairy, bread. Almost no coffee, tea, chocolate. I switched shampoos (the ones I had been using had tea tree oil) and stopped using some products that supposedly may have exoestrogens (I think that is what they call them). I am still putting progesterone cream on the area during the day and iosol iodine on the area at night. I started increasing my nightly sleep (I have always been terrible about that). Anyway, I am starting my 3rd week of 5 mg and the breast is stable. It has not gotten any worse and it may have gotten a bit better since I was at the doctor. Every day that I keep this disease at bay I consider a victory / little miracle.
One sad side effect of tapering off prednisone but keeping the methotrexate going is that I am really losing my hair. For a while, I think the prednisone was keeping the hair on my head. But now the dose is too low for that effect. I don't have enough hair to be held by clip that isn't made with the lightest plastic. The weight of the clip just pulls it out. Some days when I have time I actually use scalp makeup.
Hello ! :-)
I have not bin so active in this forum lately, Im very sorry ! I hope everybody is healing well?
My GM, is getting a bit smaller, but yesterday I when I went into the shower I felt that the mass has start to grow a bit again. Its still very open. I went to a skindoctor today and tomorrow they are testing a new bandage on my breast, its like a new skin.. having it on for one week, to see if it migth help to grow. Personaly I think that the mass needs to get out.
Im not on prednisone, just methotrexate. So I dont know if its the metho or the time who is helping me..
Are you really loosing hair Amy? How do you feel about that? and is the breast getting any better do you think?
I think about everybody on this site every day, and again, im sorry that I have not bin writing. Its so few of us so I really want to have contact with you guys.
Wish all of you the best !!
I agree that there is something good about the draining. My breast is still stable. It has not gotten much worse or any better. I am in my last week of 5 mg prednisone; after that I move to 2.5 mg. There is a very lumpy texture to the area in the breast where the disease has been. There seem to be more than 5 painless small to medium sized cysts. There was a secondary affected area during the worst part of my disease which is much lower on the breast near the rib cage. Next to the original site is a brand new cyst that I am sure wasn't there before and is a bit painful. Some days I have no pain, and some days, like yesterday, I have a bit of pain (that comes out of nowhere, not from pressing the area). That worries me because that was the sign of worse things to come the first time I tapered off prednisone.
Anyway, about the hair loss. I still have enough hair on my head so that no one would stare at me or look at me funny. My doctor said it would go away after I was no longer taking the methotrexate. I hope that is true.
I think I overdosed on the progesterone cream! I started to feel really awful, heart palpitations, feeling of panic coming on, my heart was beating in my throat but the heart rate was not increased. Skipped heart beats. I kept away from that cream for a day and thing started getting better right away. Anyone using this should read the directions carefully and don't start using more than necessary. I often have made the mistake of "more is better."
Hey Amy -
I hope that your breast remains fairly settled.
I had the exact symptoms you describe (from progesterone), when I weaned off Prednisone - heart palpitations, panic attacks - very much related to the change in these hormones, adrenalin levels. Would be interesting if it wasn't so uncomfortable.
Wishing you well.
My two doctors, the breast specialist and the rheumatologist, see my case completely differently. The rheum. sees me as diseased and the breast guy sees me as fine for the moment. I went 6 weeks on 2.5 mg. prednisone, practically nothing, during which time my breast was stable but not healed. Lumps would form and disappear. Sometimes a bit painful, sometimes not. They never got very big, filled with anything, or hurt while I jogged. When I saw the rheum. he said: OK, why don't you go off the prednisone and the methotrexate and meanwhile I want you to get a biopsy ( he's looking for those organisms found in lakes and pools). He thinks that if we cannot find the cause of the problem that I might have to be on methotrexate for the rest of my life. I saw the breast specialist to consult about the biopsy and he examined the breast and said he would not do a biopsy on an almost healed breast. He said he felt not much more that scar tissue. He advised that we should treat with drugs again if I get a real flareup. He totally disagrees with life-long methotrexate. Since I have been off both drugs (about a week and a half) I have not gotten any worse. I am trying to stick with all the "healthy habits" I have put together to keep this disease quiet. I don't know if any one them are effective but I do them anyway.
I guess it's good to have different perspecitives but not so great to have to work out the best path for yourself (and then get them to let you follow it)!!!.
Did you have the culture tests (lakes and ponds etc) done before or is this something new?
I'm so glad you are stable and drug free at the moment and can enjoy that a bit (I worry that knowing what causes IGM for most folks is a fair way off.....) ....... whatever you decide to do here's hoping you keep that way for a long time!
Now it's six weeks since I stopped the prednisone and methotrexate. I coasted for awhile, and then I started to get worse. A small unproblematic cyst started growing into a boil and the surrounding tissue started hardening into a mass. I was miserable at the thought of cycling through those drugs again. I read a post on the web about a man who had a giant boil on his side and self-healed with "healing clay." Then I did a bit more research and bought some calcium bentonite clay. I have made wet poultices and dry ones. The boil initially became flatter, then it popped but did not drain completely. That healed over. I am continuing all my other self treatments and dietary changes and the going is slow, but I think this clay is playing a real helping role. The most important thing is that, although the breast looks awful, I am almost pain free.
I am glad to hear that you are finally off the drugs. Sounds like the inflammation is fairly under control - I hope so for you. Clearing out the debris from the inflammation with poultice and clay is brilliant...I hope it also settles the tissue.
I wish they knew why our breasts are inflaming in the first place, so we could heal the cause rather than manage the symptoms which are so distressing.
So happy that you seem to be healing, you deserve it, you have been through so much and managed it so well - thanks for sharing and being so active here, your research and records of your drug experiences are I am sure helping many others.
I am so fascinated by your postings here, because they sound like the story of my life this year. I, too, have a set of "healthy habits" that I try to stick to...and then every time my symptoms flare up, I try to figure out how I messed up - did I eat the wrong thing? Did I not sleep enough? Should I exercise more? Maybe I shouldn't have had a cookie last night. I think that some of these play a role...and then again, it seems like no matter what I do, this is just my life now.
Some things I have had a little success with, in case they might help any of you:
I have tried the calcium bentonite clay too, and I agree that it is amazing. I stumbled across it by accident. I am seeing a naturopath, who told me that I should make a paste out of "green clay powder" and put it in the wound from an abscess. Then I was supposed to cover it with a warm, moist compress for 15-20 minutes, then remove the compress and allow the clay to dry before rinsing it off. Well, the first health food store I went to didn't have green clay powder, and recommended the calcium bentonite clay. Later I found the green clay powder, so I used that directly in the wound, as my NMD had recommended, however, the packaging for the bentonite clay says to use it as a facial. So...I started doing that, mainly for fun, but I have found that it seems to help with a lot of my symptoms. It is supposed to detox your system by pulling out impurities. I rub it on my face, like a facial. Also, I have constant pain surrounding a swollen lymph node in the back of my neck, and all along that side of my neck, my shoulder, and the base of my skull - so I apply the clay there too. I haven't tried putting the bentonite into an open breast wound, but once the abscess healed over, I started using it there too, and now on the current abscess, since it hasn't broken through the skin yet, I put it over the top of that too. I think it does draw out impurities. Also, it is very cold when you apply it, which is therapeutic. I try to use it at least every other day. I leave it on for 20 minutes, and take some time to meditate or read my Bible in the mean time (reading the Bible helps me too, in other ways). I think the meditation, deep breathing, stress reduction helps some. In an open breast wound I have only used the green clay powder, and I must say that it is amazing too, and helped the wound from the first abscess heal well.
Sleep helps. When I don't sleep 9-10 hours per night I feel sick. I feel sick anyway, but much worse if I don't sleep enough.
I have applied tea tree oil to the painful areas of my breast. It seems to numb the area and soothes the pain. It dries my skin out some, so I save it for the times when I am really hurting. I rub it all over - I have lumps all through one side of my breast, and in my armpit, so I cover all of that area. I do it right before bed and it helps me sleep. (I have tried Tylenol and Ibuprofen for the pain, but they don't help me at all. Do they help you guys?). I have also applied it directly to an abscess wound.
I have also tried something called ASAP gel on the abscess wound. It is cold and soothing, and seems to help with the healing and the pain. You can find it through an internet search. it isn't too expensive. It is made out of silver particles. Weird, but seems to help.
I drink alot of tea. Green tea, black tea, white tea. It has lots of antioxidants and no calories. It is warm and soothing. I eat miso soup. Also warm, soothing, and low in calories, although for breast issues, I worry about whether so much soy is a good idea. I try to eat lots of vegetables and fruit, and not so much junk. Sometimes I am successful and sometimes I fail. I think my symptoms are better when I eat well....but sometimes they are much worse when I am eating well. So....
I have thought that maybe coffee makes my symptoms worse....but feeling so run-down and crappy all the time makes it difficult to quit coffee, so I haven't accomplished that yet.
Sugar seems to make me feel worse. Same with lots of fat.
That's what I can think of for now, but if I come up with anything else that works, I'll let you guys know.
Please share anything you can think of.
Jennifer, You offer so many great options that I have never thought of! And, much like you, I am happy to read the others post and find that other woman have the same frustrations as I do!
I have been on the prednisone therapy for 2 months and HATED every minute of it), and also an antibiotic previously, not to mention 6 biopsy's and one surgery. In my case, the mass continues to grow and be very painful. I live in Germany, so I'm not sure if the treatment is better or not than in America. However, I have lots of confidence in my Dr's, even though they admittedly, don't know the best treatment for this disease. However, they have decided that a mastectomy is the best way to deal with this for me. I am 31 and still wish to have another child. I will be able to keep my nipple and skin, and have a reconstruction at the same surgery. I am ok with this, however, I just wonder because on this forum, it seems like this has not been an option for any of you. Thoughts??