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1723069 tn?1340557749

My Daughter was diagnosed "GM"

I'm a father of 52  years old living in Houston TX  my daughter of 27 years old was diagnosed with  granulomatous mastitis last week, she lives in Oregon , she is mom of one boy and one little girl.
She has one cyst in her breast and have anything in her legs too. So much pain
The doctor prescribed her prednisolone
We are worried about this, I was looking for more info in the web but I think this is the best  forum place.
Sorry because I’m a man in a women forum, we only need help.
Thank you  
29 Responses
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1627204 tn?1302012537
See a Rheumatologist Honey! My immune system is shot from part time 3rd shift and lack of consistent sleep. I never paid more than lip service to this. Now that I read Prevention Mag. and have an auto-immune disease, I see the warnings everywhere. Sleep is very important to our well being. Unfortunately, moms with young children are at risk by virtue of the demands of the season.
The sores you are describing will be of particlar interest. Also try to recall any colds you had around presentation of GM symptoms. Noelle strongly believed I would benefit from a Dr. at Mayo Clinic. Ask your current doctor if he is able to refer you with  your insurance. I think that would be a good option if you cannot find a Rheumy in your area. Mayo Clinic is an experience. I do believe they have a Clinic in FLA area.
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Avatar universal
From everything I've just read in the last cpl posts- it has raised a lot of new questions for me in my search for answers and as to what goes on with my body up to now...
And its led me on several lines of thinking that I'm just putting out there so this way you might give me more insight and this was I can approach a primary or specialist with valid reasons for continued medical questions-
I never knew abt have a rhuematologist for it being an inflammatory disease up until I started reading on this forum, and just go with my line of thinking here of there being a underlying medical conditon to me as well relating symbiotically or causing the gm-
Since I had my daughter I've pretty much had no immune system.
For the last 3 yrs for a stay at home mom I've been sick abt 3 to 4 months- someone comes around me with a sniffle and I get sick. I have body aches, joint pain, I'm tired all the time. And I also have had swollen lymph nodes and problems with my groin area continuously- as well as horrible- horrible periods. Now for the groin issues and I know this is personal, I have cysts and lumps that continually bust and abcess and drain- that has plagued me for years, not contagious, just extremely painful and sexually frustrating. All around my thighs and feminine area. No one has ever been able to answer why. No I also have sebasious cysts in other parts of my body that don't heal either and I figure is just a skin issue.
But if I start putting all my complaints in a pile- I start seeing some common thred of there being something underlying.... What do u think?
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1548207 tn?1303454180
I take 10 mg of prednisone daily and folic acid daily and 7.5 mg of methotrexate once a week currently but I have an appt on Monday to change my meds and hopefully lower the prednisone and up the methotrexate.  I also take a prenatal vitamin with iron daily.
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Avatar universal
Please site your medications and mgs.  I'm wondering what everyone's doseages is?
Oness
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1548207 tn?1303454180
I think its great u have such an interest in your daughters health. This diagnosis can be overwhelming and with not much research confusing to decide on treatment since there are no definitive answers. My advice to to do as much research as u can and read through this forum and let her choose. Everyone is different and she has to be comfortable with the treatment.  I agree no cutting but needle aspirations can be helpful for abscesses.  I am 27 and was diagnosed Dec. 2010. Currently I am taking a combo of prednisone and methotrexate for about 4 months now no miracles but there is less inflammation in the surrounding tissue according to my recent mammogram and the frequency of having drainings has decreased from once a week at my worst to 5 weeks recently. But as I said everyone is different and her care must be her choice. I hope she joins the forum at least for support these ladies are amazing. I will be praying for her.  
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1723069 tn?1340557749
annemin
if you have more info about GM with joint pain and lums in legs please let me know
I wish you you going better with your health.
thank you for your post
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Avatar universal
Hi

Sorry to hear about your daughter. I have been a member of medhelp for approximately a year, after been diagnosed with Granulomatous mastitis (GM) in July 2010. I read all the new posts here (which are invaluable to me), but I am (unfortunately) not very active myself. One day when I get the time (I do have two small children) and a very god Norwegian - English Dictionary (I live in Norway), I`ll try to write my story too...

Anyway, since I read about your daughter having lumps in her legs, I just wanted to say (or inform you about the fact) that I did have joint pain and lumps several places in front off my right leg, in my right ankle and left wrist about the same time as the GM started. My doctors told me that this most likely was/is Erythema Nodosum and/or reactive arthritis (they also checked me for Sarcadosis, but the x-rays etc. was fine). The symptoms and pain in my leg and wrist was worst the first months before it slowly got better. There has been a few cases reporting granulomatous mastitis accompanied by erythema nodosum. Maybe you could ask the doctors about their opinion regarding this....


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1723069 tn?1340557749
Hi Suzanne
Thank you for your post, next time when I talk my daughter I will ask her about the tests that you have mentioned,  very important , when I told her about the opinions in this forum, and I sent her the opinion of the dr.  Dr.Ahmet Bahadir Ergin  about that is not good idea the open breast biopsy, she told me that she is confuse, I understand her, so much pressure, I prefer  no every day ask her about the problem, she is very young same to you, but she is married and mom, I have to respect her decisions. I know she is taking prednisone, I hope this help her the pain and inflammation, I know she was reading my posts in this forum but I don’t know if she wants to participate in the future,  I will talk her about the sarcoidosis maybe this can help her doctor to find the correct way.
Helpful - 0
Avatar universal
Hi,
First of all it is very nice that you are taking such an interest in your daugther's health. I really hope everything works out well for her and maybe she can find some support in this forum when she is ready.
Your daughter does seem to have symptoms similar to mine at the time of my diagnosis. She should mention sarcoidosis to her doctors and they will no doubt do a complete physical assessment to rule out the involvement of any other body systems and possibly diagnose sarcoidosis. Do you know if she had a CRP or ESR drawn from her blood? (Im from Canada so Im not sure if they do the same tests where you are). I know with mine I had several lumps on my legs that were extremely painful, especially after putting my feet down after having them raised. Also, a lot of swelling. On the bright side, although the prednisone didn't have an effect on my breast, it did help the inflammation in my legs and joints VERY quickly. I hope your daughter has even more relief from it. Please keep us updated on how she is doing and post if you have any questions.
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1627204 tn?1302012537
As you are finding, there is a lot of information packed in these pages. When first discovered this I spent hours on the computer reading up on things. I hope your daughter takes some time to discover these pages herself. You are being a huge support to her. When you mentioned the leg sores I immediately thought of the Sarcadosis that Suzanne was dealing with. I am glad you found the entry as I didn't have the energy to dig for it at the time.
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1723069 tn?1340557749
I found in the same forum a post talking about Sarcoidosis, looks like the symptoms of my daughter

by Suzanne128462, Mar 27, 2011 09:05PM
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.
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1723069 tn?1340557749
My daughter toldme the two lumps in her leg are located below the knee in the back muscle, size one inch and a half reddish color all blood test are good and the niddle biopsies are fine too

Dr Laya is in vacations

thank you JoJo and eluriajen
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1515564 tn?1431383300
I have had swollen lymph nodes in my groin this entire time...in fact I have had swollen lymph nodes throughout most of my body. Is it possible that these are the lumps on her legs? Are they in her groin, or are they somewhere else on her legs?
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Avatar universal
Hi Dad:

One thing that is not sitting right with me is that in of all the women I have heard from on this forum, and all of the medical literature I have read - I have not heard of lumps in the legs presenting with the initial breast lumps.

I am not trying to worry you, I am just saying this seems atypical.  

I was tested for other granuloma based diseases when I first was being diagnosed - Wegner's Granulomatous, Lupus, Breast Tuberculosis, etc. -- so my own humble, non-expert opinion is - what are these lumps on her legs, are they associate with the breast lumps - what exactly is going on.

You will do well to have your doctor or your daughter consult with Dr. Laya - I think she is the world expert at this point (no kidding), and she has taken an active interest in treating GM patients...a real godsend for us, and hopefully for you.

Good luck and keep posting if you have any other questions.

Best of luck to your daughter.

btw t is a very painful condition - I didn't take painkillers at first and sure wish I did...
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1723069 tn?1340557749
itales2009 @ hotmail . com is my email
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1723069 tn?1340557749
my email is    itales @ hotmail . com
for the rest of the forum who want the article of the Dr.Ahmet Bahadir Ergin
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1515564 tn?1431383300
The webpage doesn't show me your email address - it blocks it. Mine is eluriajen @ hotmail .com (except with out the spaces in between). I am hoping the spaces will let it come through.
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1723069 tn?1340557749
is not possible to post my email
the document have pictures and is of six pages, I will try again **********yahoo.com
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1723069 tn?1340557749
You can send me your personal email to ***@**** then I can send you the complete document that the Dr Bahadir sent me.
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1515564 tn?1431383300
Thanks for sharing that response. I am happy to know that there are doctors out there who are willing to respond quickly and give good advice, even for patients who they haven't actually seen.

Is there any way that you could please send us a link to the article he sent you? I would really like to read it.

I have opted not to do any type of surgery or take medications with this disease. It has been a long, hard process (15 months so far), but I have been doing a lot better over the last few months, and am starting to think that *maybe* this will eventually go away for me. One of the things that I am thankful about is that since I never had any surgery, my breast is mostly intact. I have big scars from the biopsies, and from abscesses that burst through, but over the last 6 months with no abscesses, the scar tissue has softened some, and is lightening in color. If the GM will eventually go away, I think that my breast might be healthy and look nice again, and I am very thankful for that.

There are women who have had this disease, who have had a much worse time of things, and my heart hurts for the things they have been through. I hope that your daughter is able to come through this as painlessly as possible, even though she may have a hard road ahead of her.

Did the doctors biopsy the lumps in her legs? Are they from GM as well?

Jennifer
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1723069 tn?1340557749
I contacted the Dr.Ahmet Bahadir Ergin
and this was his response

I am attaching our article about this disease entity. I do not believe surgery is a good option for this disease. We did a extensive literature review. Please read the whole thing and rethink about it.

Good luck to you and to your daughter,

Let me know if I can help you any further.

Regards,
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1723069 tn?1340557749
I found the link
http://depts.washington.edu/gim/faculty/laya.htm
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1723069 tn?1340557749
Thank you eluriajen for your opinion
we would like to contact urgently the Surgeon Dr Laya in Seattle WA,
must be good idea the doctors can talk before surgery next tuesday.
we need the information about Dr Laya phone number or link of her website.
thank you again for your help and opinions
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1515564 tn?1431383300
I don't think that an open biopsy/excision is a good idea unless the doctor has a very specific reason for wanting to do it. Often, with GM, women who have surgical excsions (like this biopsy) end up having more problems with lumps and abscesses growing in the area. Surgery often makes the disease worse, which leads to a process of the doctors having to cut chunk after chunk out of the breast. If her doctors have already been able to rule out cancer by doing the needle biopsies, I don't think that an excisional biopsy is necessary. Your daughter needs to make her own decision by reading up on this disease, but I really think she should reconsider the biopsy, and perhaps get a second opinion before doing it. It sounds like you and your daughter both live close to some doctors who have seen this disease before...those would be a good place to start.
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