Aa
How is Everyone Doing?
I know all of our thoughts are with Lill right now -
How are you doing Twig, and WLD, Shannon, Frankie, Amy...everyone else...any updates, anyone want to share.
I hope all are having improvement.
I am so happy about Miriam and Flogw...there is success and hope.
My breast seems stable for now.
Jo
How are you doing Twig, and WLD, Shannon, Frankie, Amy...everyone else...any updates, anyone want to share.
I hope all are having improvement.
I am so happy about Miriam and Flogw...there is success and hope.
My breast seems stable for now.
Jo
birth control pills have been one of the frontrunners in the medical community as cause for this disease
I personally there are a lot of triggers that get the immune system in the breast going and it makes perfect sense that birth control would be one due to the hormonal changes...
I personally there are a lot of triggers that get the immune system in the breast going and it makes perfect sense that birth control would be one due to the hormonal changes...
I used a progestin-only birth control while I was breast feeding. Supposedly there is a "connection" between taking birth control while breast feeding and this disease. I had a lot of problems while on that birth control, including feeling extremely depressed the entire time I was using it, having a very difficult time losing weight, and just generally feeling unhealthy. I developed unexplained bloody nipple discharge while still using this birth control (long enough after I had stopped breast feeding that they didn't think there was a connection). Because of the bloody nipple discharge I had one of my breast ducts removed...and not long after that, my current problems started in my other breast. Of course, my doctors don't think any of this is connected, and that "it would be very unusual if it was." I'm pretty sure it's all connected. Anyway, I stopped using the birth control before I had the duct excision, (it was almost 2 years ago that I stopped, and a year and a half ago that I had the surgery, and then a year ago that the IGM started), but I am VERY confident that the birth control pills (also referred to as the "mini pill") contributed to everything that is happening to me now. Has anyone else had a similar experience?
I also don't fit the "profile". I'm younger, have had no children and definitely haven't breastfed! I haven't used oils or sulpha drugs though... I agree with the thought something set off a possible hormonal imbalance; I've since having GM had abnormal pap smears - wonder if it's a form of birth control aiding?
Personally, I've used every kind there is; I had an IUD in place when I first got GM (since then it's been removed, and still have GM) however since not having one, the cycles of my GM have been more prolonged (instead of every 2-3 days of draining, maybe once a week?)
Personally, I've used every kind there is; I had an IUD in place when I first got GM (since then it's been removed, and still have GM) however since not having one, the cycles of my GM have been more prolonged (instead of every 2-3 days of draining, maybe once a week?)
I would definitely stay away from it.
I have never had children, don't fit the profile for this disease at all. I think something else set off my immune system and hormonal imbalance, as it wasn't breastfeeding and I strongly believe that it was either sulpha drugs or oregano oil. I will never, ever use any oils on my body again...feel it is too risky.
I am glad you stopped the tea tree.
glad to hear you are feeling better too :) jo
I have never had children, don't fit the profile for this disease at all. I think something else set off my immune system and hormonal imbalance, as it wasn't breastfeeding and I strongly believe that it was either sulpha drugs or oregano oil. I will never, ever use any oils on my body again...feel it is too risky.
I am glad you stopped the tea tree.
glad to hear you are feeling better too :) jo
Amy and Jo,
I'm so sorry - I didn't see this post until now. I am so interested in what you both posted, and now I'm trying to piece things together in my mind. Shortly before all of these problems started for me with the IGM, I had a weird scalp problem...and started using tea tree oil shampoo and conditioner....and I have used them the entire time I have had this, plus then the topical tea tree oil on my breast because, if nothing else, it really numbed the pain. Then, within the last couple of months I have stopped using the shampoo and conditioner...mostly because it was so expensive, and I wanted to see if my scalp would be ok without it now. PLUS, over the last couple of months, my breast symptoms have been significantly better. Is it related???? My mind is reeling now. Well...I guess tea tree oil is out now, for sure...
I'm so sorry - I didn't see this post until now. I am so interested in what you both posted, and now I'm trying to piece things together in my mind. Shortly before all of these problems started for me with the IGM, I had a weird scalp problem...and started using tea tree oil shampoo and conditioner....and I have used them the entire time I have had this, plus then the topical tea tree oil on my breast because, if nothing else, it really numbed the pain. Then, within the last couple of months I have stopped using the shampoo and conditioner...mostly because it was so expensive, and I wanted to see if my scalp would be ok without it now. PLUS, over the last couple of months, my breast symptoms have been significantly better. Is it related???? My mind is reeling now. Well...I guess tea tree oil is out now, for sure...
Always good to hear from you Amy, sorry that things are continuing for you though...hopefully 2011 will be the year you get rid of this for good.
Regarding the tea-tree oil, I don't know, because I guess you never do, but I have always been highly suspicious that oregano oil may have caused my auto-immune reaction in my breast. I had a simple rash on my arm, (biopsied as granuloma annulare), near my shoulder of the breast that later had IGM, and I put oregano oil on it, as I had read that it was an effective skin soother. Anyway, I immediately felt very ill after using it for a few days, and shortly thereafter this developed. I have no real idea if this was a cause, but I have often wondered. Oregano oil, ruptured cyst or reaction to sulpha drugs are the three things I think may have started my system inflaming in this area.
Obviously tea tree oil is different, but none of these oils are inert, and I think as you have mentioned with the clay, natural materials are great but need to be respected and researched as much as the manufactured drugs, as they often have just as strong an effect on your system.
Anyway, just my two cents on oregano oil - I would certainly never use it again!
JO
Regarding the tea-tree oil, I don't know, because I guess you never do, but I have always been highly suspicious that oregano oil may have caused my auto-immune reaction in my breast. I had a simple rash on my arm, (biopsied as granuloma annulare), near my shoulder of the breast that later had IGM, and I put oregano oil on it, as I had read that it was an effective skin soother. Anyway, I immediately felt very ill after using it for a few days, and shortly thereafter this developed. I have no real idea if this was a cause, but I have often wondered. Oregano oil, ruptured cyst or reaction to sulpha drugs are the three things I think may have started my system inflaming in this area.
Obviously tea tree oil is different, but none of these oils are inert, and I think as you have mentioned with the clay, natural materials are great but need to be respected and researched as much as the manufactured drugs, as they often have just as strong an effect on your system.
Anyway, just my two cents on oregano oil - I would certainly never use it again!
JO
About bentonite clay and tea tree oil:
When I was researching the safety of bentonite clay before I purchase it, I read one study that said that if you stick something coated with bentonite below the skin surface, you can cause the formation of granulomas. So I promised myself I would never put the clay on an open wound. Well, I have already gone against that pledge.
I have a new recipe for the clay that works better (more aggressively) than the simple one half cup water to one quarter cup clay recipe (although that is soothing and effective.) Now I add one half to 3/4 teaspoon epsom salts into the water before I add the clay, and the ratio is 1/2 cup to 1/2 cup. It has the effect of drawing out whatever is in there more effectively. I had a lingering small boil that grew after I went off the prednisone and methotrexate. At first the clay only flattened it out. Then the skin broke but it only drained partially. I used the clay a lot but it wasn't until the introduction of the epsom salts that the boil begain to decrease in size. Then the skin broke again and I made the decision to continue to use the clay. Things are going OK. I can't prove it, but I think if I were not using this clay regularly I would be in really bad shape.
About tea tree oil: I used to be a heavy user of tea-tree oil products on my scalp. When I was researching GM and looked at it from the breast cyst angle, I stumbled upon a site, www.nobreastcyst.com (they don't talk about GM) that said that estrogens of all kinds were really bad for breast cycsts, and that many products had exoestrogens that could be absorbed into the skin and throw a woman's hormones off. Tea tree oil was one of the substances they mentioned. I stopped using those products, even though I loved them.
You mentioned meals high in fat -- Yes!, I have noticed that after eating high-fat, I get some pain twinges.
When I was researching the safety of bentonite clay before I purchase it, I read one study that said that if you stick something coated with bentonite below the skin surface, you can cause the formation of granulomas. So I promised myself I would never put the clay on an open wound. Well, I have already gone against that pledge.
I have a new recipe for the clay that works better (more aggressively) than the simple one half cup water to one quarter cup clay recipe (although that is soothing and effective.) Now I add one half to 3/4 teaspoon epsom salts into the water before I add the clay, and the ratio is 1/2 cup to 1/2 cup. It has the effect of drawing out whatever is in there more effectively. I had a lingering small boil that grew after I went off the prednisone and methotrexate. At first the clay only flattened it out. Then the skin broke but it only drained partially. I used the clay a lot but it wasn't until the introduction of the epsom salts that the boil begain to decrease in size. Then the skin broke again and I made the decision to continue to use the clay. Things are going OK. I can't prove it, but I think if I were not using this clay regularly I would be in really bad shape.
About tea tree oil: I used to be a heavy user of tea-tree oil products on my scalp. When I was researching GM and looked at it from the breast cyst angle, I stumbled upon a site, www.nobreastcyst.com (they don't talk about GM) that said that estrogens of all kinds were really bad for breast cycsts, and that many products had exoestrogens that could be absorbed into the skin and throw a woman's hormones off. Tea tree oil was one of the substances they mentioned. I stopped using those products, even though I loved them.
You mentioned meals high in fat -- Yes!, I have noticed that after eating high-fat, I get some pain twinges.
Thanks so much for your thoughts! I will definitely read further to examine other woman's experience. It just seems like the right choice for me, right now. I have been through the ringer, the stress is overtaking me! I fear this will turn into breast cancer if it doesn't leave my body. Is that a crazy thought?? My surgery is scheduled for the 29th of this month. You asked about my support group...I live in Germany...my mother is more than willing to come here and support me, I do have a husband, although, he doesn't seem too supportive of this decision. Hmmm, I'm in a hard place, I really feel this is what I need to do to cure this disease. I am happy I found this forum, I really enjoy reading about all of your experiences and thoughts.
Cindy
Cindy
Hi C:
Jennifer is right, mastectomy has been a successful way of treating this disease for many of the women who have posted here -- I would say almost 50% of those who have shared their stories. Particularly with women of your age who seem to be pretty hard hit with the symptoms, they want to get on with their life and families and not manage GM on a daily basis.
Management experiences and choices and outcomes are really varied for GM and IGM.
There are also pretty extensive posts here from people who have gone the anti-inflammatory routes, detailing experience with those treatments. Others use eastern medicine or naturopathic.
You will find some good information here I think, let any of us know if you have any questions and good luck with your surgery.
Jo
Jennifer is right, mastectomy has been a successful way of treating this disease for many of the women who have posted here -- I would say almost 50% of those who have shared their stories. Particularly with women of your age who seem to be pretty hard hit with the symptoms, they want to get on with their life and families and not manage GM on a daily basis.
Management experiences and choices and outcomes are really varied for GM and IGM.
There are also pretty extensive posts here from people who have gone the anti-inflammatory routes, detailing experience with those treatments. Others use eastern medicine or naturopathic.
You will find some good information here I think, let any of us know if you have any questions and good luck with your surgery.
Jo
Hello,
Just wanted to let you know that there are women on this forum who have elected to have mastectomies to treat their IGM; if you read further along in some of the older posts, you will be able to read about some of their experiences. From what I have read, this seems to have been a positive choice for some of them. I have decided (for now) to go the less invasive route. When are you supposed to have the mastectomy? Do you have a good support group at home (family and friends) who you can talk to about this? Please let me know how you are doing, and if there is anything I can do to help, please let me know that also.
Jennifer
Just wanted to let you know that there are women on this forum who have elected to have mastectomies to treat their IGM; if you read further along in some of the older posts, you will be able to read about some of their experiences. From what I have read, this seems to have been a positive choice for some of them. I have decided (for now) to go the less invasive route. When are you supposed to have the mastectomy? Do you have a good support group at home (family and friends) who you can talk to about this? Please let me know how you are doing, and if there is anything I can do to help, please let me know that also.
Jennifer
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??
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??
Hello, Friends.
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
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
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.
Jo
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.
Jo
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 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!
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!
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.
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.
Jo
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.
Jo
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."
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."
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 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 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.
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.
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.
Jo
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.
Jo
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.
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.
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