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Avatar universal

Sarcoidosis and GM

Hi everyone! I am a 23 year old female who was diagnosed with granulomatous mastititis 2 months ago, after a breast biopsy. My entire breast is one hard lump with dimpling down the side. At the same time, I was also diagnoses with sarcoidosis (which was also causing inflammation in my joints), which the rheumatologist decided to treat with prednisone. I started on 30 mg of prednisone and the next day I saw the breast specialist, who felt that the prednisone i was already prescribed would clear up the GM as well. He admittedly had never seen this before but strongly felt this is all I would need. It has been a month and a half since i started the prednisone and I have not noticed any improvement in my breast. Actually, over the last couple of days, it has gotten larger and more painful. I expected it to work a lot faster to heal my breast as it worked almost instantaneously on my joints. I am wondering when I should plan to go back to see the specialist if it doesnt start to get better? Has anyone had any experience with having GM caused by sarcoidosis? Has anyone had any success with being treated with prednisone alone?
17 Responses
1627204 tn?1302016137
I read your post with interest. One because you are new...so WELCOME! Second because it sounds like you were diagnosed about the same time I was. Read my journal entries and you will find a very similar story. Third because I am not familiar with Sarcoidosis. I am familiar with joint pain. I figured it was all the antibiotics that they were throwing at me for the mastitis. I started weaning off prednisone yesterday and I am already feeling the pain in all my joints again. From what I read of other womens posts the pain in the joints is a frequent symptom. I have also picked up that although the accute nature of the mastitis can be relieved, often the hard lumps stay. I may be wrong about this since I am still weaving my way through everyones post and putting my mind around this disease.
1515564 tn?1431386900
I am not familiar with sarcoidosis. I have had joint pain that comes and goes, corresponding with the times when my breast symptoms are the worst. There is a definite connection. Throughout the course of all this, I have had different sizes and hardnesses of lumps in different areas of my breast. For the last year, I have not had a single time that I was completely lump-free, however the lumps are definitely changable. I haven't tried any of the normal IGM treatments - steroids, methotrexate, etc. I took a lot of antibiotics initially. I have tried anti-fungal drugs, and also lots of "natural" medications and supplements. So...I can't speak as to how quickly the steroids normally work; however, from what I have read, I think that many of the women who have tried steroids have experienced pretty quick relief when they start them.

I am sorry to hear that you are going through this. You are so young : ( I hope that you are able to find some helpful information and support here; the women who post here are strong and amazing people. Please post any more questions that you have, and we will all try to answer : )

Jennifer
Avatar universal
Thank you both for your responses. It is so helpful to read and learn from other women's experiences, especially since I was told this is such a rare medical condition. I had not heard of sarcoidosis either until I was diagnosed with it. It is an inflammatory disease of unknown cause that can cause clusters of cells in almost any organ system in your body (it usually affects the lungs, but luckily mine didn't). It took the doctors a while to link all the symptoms together but they finally decided that I had sarcoidosis which caused the GM as well and inflammation in my joints ( I also, at the same time had mono). Pandora, your story sounds so similar to mine. It could be the antibiotics causing the joint pain-but it could be sarcoidosis. do you have any red lumps on your shins or feet (that was what happened to me). I noticed that both of you were prescribed antibiotics. I am a nurse and of course, when i heard mastitis i initially questioned why the doctors did not want to put me on antibiotics. They said that antibiotics would help only with mastitis but not granulomatous mastitis. My family and I are still convinced that antibiotics would help, especially since i now have a new hot sore red lump on my breast. Eluriajen, did any of your treatments work? I hate being on the prednisone- my skin has all broken out on my face and chest and it looks like a mess.I would love to hear of another possibility for treatment
1627204 tn?1302016137
If you haven't already explored JoJo's posts, do so. Jennifer also has much helpful advise. JoJo just explains what is happening in such understandable language. I copied a description from clarep34s question "What can I expect" and gave it to my doctor, because they seemed so clueless. My GP gave me anti-biotics initially, but did not want to continue them and referred me to a Breast Specialist. She biopsied and put me on an Anti-biotic to prevent possible infection because of the biopsy. Now she is consulting with the Dr. Laya in Seattle, who apparently prefers to knock it down with Prednisone and give High Doseage of Amoxicillin for a longer period of time. But JoJo is right. You will have to be the one to research this. Amy also has a comprehensive history posted as well. I am learning a lot from these women. I have a hard time tracking everything...but I feel I am getting a handle on it. There are so many women I haven't mentioned that I have learned from too. Each one of you help us understand.
1515564 tn?1431386900
Suzanne,

I really don't reccommend antibiotics to treat this. Even though it is referred to as "mastitis," it isn't actually an infection. From the beginning, my doctors thought that I had cancer...so they did several biopsies, which were all sent in to have pathology done...but they never ordered cultures. The pathology came back as what "looked like" an infection...but because there were no cultures, my doctors didn't have a specific bacterial agent to know was causing the problem (which turned out to not be an infection at all)...so they were just kind of shooting in the dark, trying different antibiotics, hoping that one of them would eventually work. Which...obviously, they didn't. The problem with taking lots of antibiotics (which I'm sure that you know, as a nurse) is that they kill your body's good bacteria, along with any bad bacteria that they are fighting against. By the end of all the antibiotics, I was so sick. I had vaginal yeast infections, yeast infections in my armpits, and also in my mouth (gross, I know...sorry for the details). I also had stomach problems, and was completely exhausted most of the time. I think that part of this was from the disease, but part of it was also that the antibiotics had really wiped out my immune system. I think that in the long-term, the antibiotics made my body so weak that it had a more difficult time fighting the IGM. So...perhaps some of the other ladies have had a different experience, but in my opinion, antibiotics are not a good option for how to treat this disease.

None of the other things I have tried have been effective - I took the antifungal drugs for as long as I could, until I couldn't force them down any more, as they were making me very sick, and I got to a point where I would gag when I tried to swallow them. I took those for about two months. None of the natural stuff seemed to help much either. I have used bentonite clay a lot, and I think that has helped significantly (there are other posts that describe in more detail about this).

Honestly, the things that have helped me the most are sleeping (as much as possible!!!), eating healthy foods, not eating unhealthy foods, exercise when possible, and time. No matter what treatments you choose, this disease isn't something that is likely to go away quickly or easily, so no matter what, even with a good outcome, there is going to be a period of time when you will have to deal with this disease and its' symptoms. It is best to try to keep a good outlook, and try not to panic (honestly, I panic and freak out every time something changes with my symptoms, and all of it is so scary to me...I just don't think that being afraid or stressed is the most healthy way to cope, so I am trying to keep good perspective).

Some of the women here have had success with different treatments, including steroids, methotrexate, and surgery. I have chosen not to do any of those things, so I can't say how well they work one way or another.

Jennifer
1627204 tn?1302016137
I am seriously cosidering quitting the amoxicillin once I am off the prednisone. I have to quit them at the same time since that would be two variables to consider at one time. However, my question is, once I am done I am thinking of taking pro-biotics to re-plenish my good bacteria. Have you ever done this?
1515564 tn?1431386900
I took probiotics, and initially, I noticed a BIG improvement in everything. I generally felt healthier, less tired, less stomach problems, etc. But I had definitely taken a lot of antibiotics, and was completely wiped out. I felt so much better to start out with that I found myself hoping that the probiotics were making the disease go away...they didn't, and I ended up with a new abscess about a month after starting to take the probiotics, but they did help restore my immune system, and it seemed to me like that abscess healed more quickly than the others.
Avatar universal
My rheumatologist diagnosed my GM as being caused by sarcoidosis initially.  This was based on the results of a biopsy and my answer to one question he posed to me about leg sores.  My answer was yes.  But that was many years ago and it was eczema!  I had a completely normal chest xray and I don't have joint pain.  I am not sure what joint pain is.  I think I'll google that.

I think it is very interesting that some breasts respond well to prednisone and some not at all.  I had dramatic improvement which did not last once the drug dose was lowered. Maybe some day they will discover that there are different kinds of GM.

More about the clay.  I am always experimenting with different "formulas."  Now I am adding ginger and curcumin to the mix because of their anti-inflammatory properties.

There is what my 3 doctors think about the calcium bentonite clay:

My primare care physician cares only about my cholesterol level even though my ratios are fabulous.  He thinks I am nuts for using the clay and was annoyed at me because when I saw him my skin was a bit reddened by having the clay recently on it and he thought this was a "big issue."

My rheumatologist thought it was peculiar but had to admit that he had been expecting my breast to be a disaster area after 4 months of being off any drugs and he could see it was not.  Nevertheless, he pointed out that I was not healing and I was not as good as when I was on the prednisone (of course not!)  He was interested in the mechanics of how I used the clay.

My breast specialist was amazed that I had been able to control the aggressiveness of the disease, that I was without pain and yet not on any drugs.  He asked: well, could you simply go on like this?  He was also interested in the mechanics of how I used the clay.

I recently had a mammo and ultrasound and they were not painful.
1548207 tn?1303457780
Hi and welcome. I am 27 and  was diagnosed in Dec 2010 with GM and was recently tested for sarcoidosis by my rheumatologist but don't have it. I just started a combo of prednisone and methotrexate last Wed and haven't seen much change but am hopeful. I am on my 3rd round of antibiotics which I feel haven't done anything except maybe prevent infection from having fluid drained almost weekly for the last month or so. I am going to see an infectious disease doc Wed to discuss other options to as recommended by my breast specialist who feels they r a good asset to have in our corner.I know my breast specialist wants to see me anytime I get worse or begin to get an abscess to have an ultrasound and draining so never hesitate or feel bothersome to them that is what they are there for. I hope something starts to work for you soon. Just listen to your body and try to do what works best for you  there is no one size fits all treatment unfortunately. Good luck!
1515564 tn?1431386900
Amy,

I love how you and I have this love affair with the bentonite clay. It cracks me up. I know it seems like such a strange thing to put a clay paste in a wound...but honestly, it has helped me tons. I would say that it is the only thing that has helped me to feel at all better. Have you ever used it for a facial, or do you only put it on your breast? I do both, and I know it seems strange, but I think that even as a facial it helps to draw out impurities, and generally makes me feel better. I started using the clay because my naturopath reccommended it, and I am so thankful for that, at least.

I was also laughing at the descriptions you gave of what your doctors think. I have had doctors say such ridiculous things to me. It is funny that they can have such strong opinions about what we should do, when in reality, they don't understand much about this disease, and they don't really know what to do.

All,

My primary care doctor mentioned that different autoimmune diseases often go hand in hand, so it is common to have more than one at a time. So, maybe that is the case with IGM and sarcoidosis. I have had an autoimmune panel blood test done, but tested negative for all that I was tested for. I also had a chest xray, which was completely clear.

Jennifer
Avatar universal
Hi Suzanne:

Sorry to hear you are having such a rough time.

I would recommend seeking a second opinion.  The management of GM may be done in concert with management of your sarcoidosis, but there are subtleties in the prespcribing and weaning of the corticosteriods for GM that should be taken in to account here.  Also whether methotrexate is indicated to prevent relapse.

I certainly noticed quite immediate improvement once I started prednisone, for my breasts, they would settle quite dramaticaly and I would have pain relief, not that it went away, but I certainly felt the drug was affecting the process.  It seems that may not be the case for you.

I would not hesitate to get a second opinion.  I remember vividly being so sick, so toxic and having to go from doctor to doctor to find the right people to study this disease and take an active interest in its management and in learning about GM, and the state of the art information, and related care guidelines.  I think you have to make sure you are being treated appropriately.  Have a family member be your advocate if you don't have the energy.

Has anyone had a look at your breast recently to ensure you are not a candidate for draining the mass?  You may be developing a sinus, it certainly sounds like the pressure is building in your breast. I wish you well.  Please post and let us know how things are going for you.

JO
Avatar universal
Thank you so much for your support.  I know I definitely need to look for a second opinion. I was hesitant at first because the breast specialist who I see (and a far a I know the only one around) is also a surgeon and a coworker of mine ( the joys of living in a small city). I have only seen him as a patient the once but he always asks me at work how I am doing... Unfortunately the medication room at work is not where I would get into any in depth conversation about my breast so all I have told him is that it isnt getting any better. He openly said "well you are the first case I have seen with this so I am not sure how long it will take but hang in there". The rheumatologist did see it last week when the red spot was initially forming and didn't seem to be very concerned about it. But she has been more concerned with my feet and joints from the begining. No one has ever mentioned draining the mass, but this seems to be a method of treatment for so many women. I will definitely bring it up to my doctors. I am not sure why they hadn't suggested it.
It is so strange how different this disease is day to day. Actually today my breast feels a lot less painful than yesterday. I was wondering if any other women notice changes during their menstrual cycle. Is it any worse at certain times of the month. I am hoping this is the case and it could possibly explain why I my breast seemed to have gotten worse a couple of days ago and now seems slightly better.
Also JoJo, how long were you on prednisone for? And did your symptoms return when you tapered?

To Red
It sounds like you are going through an awfully rough time with this. Having to have abcesses drained weekly must be tiring. Do they seem to keep coming in the same places or have they moved?I am almost certain that the hard lumps in my breasts are not abcesses, but the red spot is worrying me just a bit. What are your symptoms? Good luck with the infectious disease doctor. i hope that they have some other suggestions. Please let us know how you make out.
1548207 tn?1303457780
I personally  notice more pain and symptoms during my cycle and my specialist said its probly from the hormone changes women experience during that time.

As for my symptoms they were just hard painful lumps, at first only one large one. The redness is usually a sign for me that i may have fluid building up or the start of an abcess so it needs drained to prevent it opening on its own which can happen and typically doesn't heal as well. Initially it was just one lump and the same place that needed drained but about six weeks ago i noticed a second lump closer to the nipple and it is very inflammed currently. We tried draining last week but not much fluid which meant not much relief. Typically for me as painful as the drainings can be they give a relief pretty fast and heal good. You should certainly talk to your doc about it I know Jo and several others here find them helpful. As for me I will keep everyone updated on my docs and meds. I'm being hopeful and keeping you all in my prayers that we all find helpful treatments and better health!
Avatar universal
I had the abscess drained today. I went to the ED and the doctor took my right to the procedure room and drained 750 milileters. I now have a 4 inch deep packing and a he left a tube in it to drain any fluid that might be left. Have you had this before? I am so scared about it not healing properly. I did not expect to come out of there with a packing that needs to be done daily and a drain, I was just wondering if this has been the case with anyone else.
Avatar universal
I just started a post on monthly cycles and GM flaring up then... I've noticed mine flares up more than normal right before my cycle and remains that way throughout then simmers down inbetween, bringing it up with my doctor at my next appointment!

I've had a drain (then packing that was changed 2-3X a week by my surgeon) after my last surgery for GM in November. She left a drain in (in hopes of aiding to heal inside out) then when that was removed, packing until there was nothing left to pack. During that healing time, I also had 1 in clinic biopsy/drain recut (it was healing faster than my surgeon had wanted, so she in office re-opened and widened the tract that was narrowing to fast). Total healing with packing was from 11/10-2/11.

It seemed to heal FANTASTIC!!! However, we found on an u/s that was done in 2/11 that the tract removed from surgery was widening (although I hadn't had a GM flare up at that time) - so it was a given that with time, my surgery (the 2nd under a general) had failed. My GM is back in full force - more during my monthly cycles. We've been retracing our steps; back on steroids (although a lower dosage), back on another drug, and of course large dosages of antibiotics (that I've always been on)... seems like we're just buying time until it flares up enough or causes a big enough hole (literal OPEN hole) in my breast for another surgery - however, I'm opting (demanding) a masectomy. I've waited long enough. Tired of "managing" GM, I need it gone!
1656820 tn?1302198644
I was diagnose back in 1994 with Sarcoidosis and Lupus. I have fault with these two decease the steroids never help me out. When I first was told I had it I was 28 years old I was placed on the steroid and cordisone shots. The pain never got better at all. And the weight gain from the steroids was even worse. Not to mention how it messed with my other organs as well. I am now on methodraxic and another drug call remcade. It is the only thing that I have found to help me with my joints. Although I have been told it has hit my heart now. I don't know what they will be doing with me. Sent I was told on Friday all I can do is keep my faith and hope that the specialist can help. I hope you get help soon. I would ask abouth these two drugs. Which seem to help the joints.
1656820 tn?1302198644
I totally agree with you. This disease has played apart of mylife for a while. I've had my share of pain. The first time that I was diagnose with this disease was back in 1994. I was in the hospital because of my breathing and my skin was all broke out with red blister things I never felt so sick. The first thing they did for me was put me on antibiotics and pain medication. But the anitbiotics seem to make me sicker. And then they order more blood work on me. Which showed that my liver counts where off. At first they where telling me I had cancer. I was so upset that it wasn't even funny. Along with my family and friends. So they called in a special disease specialist in. And he took over my case. He order serveral boiplcy on my skin liver and lungs. When they all came back to tell me that I had sarcoidosis and lupus I didn't know anything or even hard of sarcoidosis but I did know what lupus was. They placed me on steroid and took me off of the anitboitics. I was on steroids all the time but I had a counter reaction to them as well. I gain weight and fluid to where I couldn't see my feet and my hands also swelled up. My joints hurt me so much that I would just cried. I even got so depress that I didn't want to do anything. But then something inside of just said I had to do something because I had to children that needed me. So I got the facts about sarcoidosis and started fighting back. I have a lot of good doctors now that work with me and when I don't understand something I ask a hundred times for them to explain to me. Or I go to the internet and look it up. I excise in the pool to keep my joints working and out of pain as well. I fined good releaf being in the pool with the warm water as well as the hot tub. I also take methotrexate and remicade. For my joints. Which seems to help also. But when my lungs acted up I am back on the steroids which I hate. I have cut down on all junk foods and I stay away from anything fried foods as well I also eat alot of yogurts and things that help restore the good bactrica in the body. All though I still am sufering alot from the two disease. I still keep my faith and go when Iam feeling good and rest when I am not. I also belong to a women support goup as well and stay away from so much stress. stress can play a key roll in how your body works. I also stay away from people that get sick from any flus or colds as well. I do not know what the out come of what will take place of my heart. Sent I was just told that it has now effected my heart. I will find out on the 27.  I just hope and pray that someday they come up with something that really helps.
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