Aa
How I am doing.
For the last 9 months or so, I have basically refused to go to the doctor. I have been so frustrated to have all of this stuff going on with me, to be feeling so sick, to be spending so much money on medical care, and to basically be told over and over again that none of my doctors really understand what is going on with me, being pressured to do things that I don't want to do, and wasting so much time on doctor's visits for no reason. So...I just went on break, and didn't go to the doctor for a while. Anyway, our deductible on our medical insurance resets on July 1st, and we have already paid so much money in this year that I started thinking now was the time to get some tests done if I was going to.
SO...I saw my PCP, who ordered a brain MRI for my weird scalp tingling sensations. He also ordered bloodwork, including a Prolactin level. The MRI was negative (terrific news). All of my bloodwork looked really good, except for my Prolactin level, which was high (has anyone else had high Prolactin levels?). I will be following up with him about that in 2 weeks.
Then I saw the NP at my breast specialist's office (the doctor is on maternity leave until September). She started talking to me about antibiotics again, and I tuned her out from that point on. Anyway, she ordered a breast ultrasound (I have several large, somewhat new lumps). I had the ultrasound today. They couldn't see anything on the ultrasound. I don't know if that's common for you guys, but that's pretty much how it has been for me....even when the tech and radiologist can feel my lumps, they are not able to see them on ultrasound unless there is fluid in them. So, the radiologist recommended just waiting for a while to see if I keep improving, and otherwise letting things be...which is what I wanted to do anyway.
I have been doing so much better lately. I have more energy. I don't have as much joint pain. My breast still throbs and hurts sometimes, and I have lymph nodes in my armpit and neck that still hurt. But I really do feel a lot better. My bloodwork was really encouraging too (aside from the prolactin). My HDL and LDL cholesterol both improved from the last time, and so did my CRP. I know that those aren't specifically indications of how my breast is doing, but I feel like overall, it all shows that I have less inflammation and I am doing better.
One thing is that I am terrified that even if it completely goes away, this can come back at any time. How do you know if you don't have GM anymore? When the symptoms are gone? I still have some symptoms, but a lot less.
Also, I really want to say that I think that not doing anything is a really good course of action, if you can stand the pain. I know how painful it is : ( But this has worked really well for me. Also, I have mentioned before, there was a study done in China that showed that in 50% of the study participants that GM went away on its' own, in an average of 14.5 months, if it wasn't treated at all. I am at 15 months now, so a little bit past the 14.5 mark, but I am doing pretty good. I know that you each have to make your own decision. But my opinion is that not treating GM is a really good option. I think that the initial biopsies often set off the abscesses, which are scary and terrible....and surgeries/excisions make it all worse.
I know that some of you have heard this from me before, but I felt like it was weighing on my heart to say it again.
I care about what all of you are going through SO VERY MUCH because I have been through it too. I know how hard it is. I wish that I could spare all of us the pain of this horrible disease. Anyway, I absolutely believe that each woman should educate herself and then make an informed decision. I just feel like the medical world isn't really sharing the fact that doing nothing is an option...so I feel like I need to keep saying that it is an option...and that it is a good option.
I really appreciate all of you and your support through this process. It means so much to me.
Jennifer
SO...I saw my PCP, who ordered a brain MRI for my weird scalp tingling sensations. He also ordered bloodwork, including a Prolactin level. The MRI was negative (terrific news). All of my bloodwork looked really good, except for my Prolactin level, which was high (has anyone else had high Prolactin levels?). I will be following up with him about that in 2 weeks.
Then I saw the NP at my breast specialist's office (the doctor is on maternity leave until September). She started talking to me about antibiotics again, and I tuned her out from that point on. Anyway, she ordered a breast ultrasound (I have several large, somewhat new lumps). I had the ultrasound today. They couldn't see anything on the ultrasound. I don't know if that's common for you guys, but that's pretty much how it has been for me....even when the tech and radiologist can feel my lumps, they are not able to see them on ultrasound unless there is fluid in them. So, the radiologist recommended just waiting for a while to see if I keep improving, and otherwise letting things be...which is what I wanted to do anyway.
I have been doing so much better lately. I have more energy. I don't have as much joint pain. My breast still throbs and hurts sometimes, and I have lymph nodes in my armpit and neck that still hurt. But I really do feel a lot better. My bloodwork was really encouraging too (aside from the prolactin). My HDL and LDL cholesterol both improved from the last time, and so did my CRP. I know that those aren't specifically indications of how my breast is doing, but I feel like overall, it all shows that I have less inflammation and I am doing better.
One thing is that I am terrified that even if it completely goes away, this can come back at any time. How do you know if you don't have GM anymore? When the symptoms are gone? I still have some symptoms, but a lot less.
Also, I really want to say that I think that not doing anything is a really good course of action, if you can stand the pain. I know how painful it is : ( But this has worked really well for me. Also, I have mentioned before, there was a study done in China that showed that in 50% of the study participants that GM went away on its' own, in an average of 14.5 months, if it wasn't treated at all. I am at 15 months now, so a little bit past the 14.5 mark, but I am doing pretty good. I know that you each have to make your own decision. But my opinion is that not treating GM is a really good option. I think that the initial biopsies often set off the abscesses, which are scary and terrible....and surgeries/excisions make it all worse.
I know that some of you have heard this from me before, but I felt like it was weighing on my heart to say it again.
I care about what all of you are going through SO VERY MUCH because I have been through it too. I know how hard it is. I wish that I could spare all of us the pain of this horrible disease. Anyway, I absolutely believe that each woman should educate herself and then make an informed decision. I just feel like the medical world isn't really sharing the fact that doing nothing is an option...so I feel like I need to keep saying that it is an option...and that it is a good option.
I really appreciate all of you and your support through this process. It means so much to me.
Jennifer
Yes Jojo
Thank you for remembering me! I havent been so active in this group for awhile. I guess I was trying to put gm behind me....but the truth is that I still have pretty bad flare ups. The last treatment I had was 3 weeks steroid. Before that, I did. 1 week only...and yes, steroids do work well..but flare ups come back after the pills wear off....and the side effect of 3weeks steroid is not pleasent! Now, my insertion healed up on its own. I don't have any more outage for pus to leak out....and a new lump was developed couple weeks ago....
Yes my prolactin level was higher than normal, but my radiologist said it's not too high too confirm a tumor in pituatary gland. So, I didn't go for MRI. My own theory is that the flare up caused the increasing prolactin level.
I've read an article where a woman with gm in Taiwan was treated successfully with 3 months of steroids. My doctor wants to try that...but I'm so scared...
To begin with, I do not like like the side effects of steroid..and I worry that another new lump will appear after the pills....
I also have some faith for it to heal on it's own without any treatment. Although the pain can reach to tearing point....but I'm trying to not even take ibuprofen. I'm also teaching myself to have greater pain tolerance....hope this will go away after 14.5 months.
I do believe that more disburtance to gm by surgery, cutting...etc...will make the body more confused and more angry....so please let us pray that someone will come out with a plan really works...
Thank you for remembering me! I havent been so active in this group for awhile. I guess I was trying to put gm behind me....but the truth is that I still have pretty bad flare ups. The last treatment I had was 3 weeks steroid. Before that, I did. 1 week only...and yes, steroids do work well..but flare ups come back after the pills wear off....and the side effect of 3weeks steroid is not pleasent! Now, my insertion healed up on its own. I don't have any more outage for pus to leak out....and a new lump was developed couple weeks ago....
Yes my prolactin level was higher than normal, but my radiologist said it's not too high too confirm a tumor in pituatary gland. So, I didn't go for MRI. My own theory is that the flare up caused the increasing prolactin level.
I've read an article where a woman with gm in Taiwan was treated successfully with 3 months of steroids. My doctor wants to try that...but I'm so scared...
To begin with, I do not like like the side effects of steroid..and I worry that another new lump will appear after the pills....
I also have some faith for it to heal on it's own without any treatment. Although the pain can reach to tearing point....but I'm trying to not even take ibuprofen. I'm also teaching myself to have greater pain tolerance....hope this will go away after 14.5 months.
I do believe that more disburtance to gm by surgery, cutting...etc...will make the body more confused and more angry....so please let us pray that someone will come out with a plan really works...
Hi. About prolactin. There was a discussion about prolactin awhile back in this group. I believe it is under the title "mastitis." I said:
I too tested for higher than normal prolactin (twice, I think: once when I was in my twenties and once after my first child was born). I have no idea what my levels were before I got GM.
I too tested for higher than normal prolactin (twice, I think: once when I was in my twenties and once after my first child was born). I have no idea what my levels were before I got GM.
Hi,
It would be interesting to have known what your levels were like when this all started.. How long ago was it now? I hadnt heard of benadryl elevating prolactin levels-that is interesting. do you know how much it can elevate them? With the bromocriptine I experienced severe nausea and fatigue-no hallucinations. With the cabergoline-nothing.=) I'm sure a lot of people do fine on the bromicriptine-its actually used for parkinsons patients at a higher dose so its pretty common and as far as I know pretty well researched. My prolactinoma did show up on the MRIs (I have then every4-6 months). Its .9 by 1.2 cm.
I find it hard to believe that the bloody nipple discharge was unrelated-everytime I tell a doctor about my prolactinoma they always ask about nipple discharge so Im sure there is some connection there.
Things with me are a little scary-Just found out I am 10 weeks pregnant. Although I'm excited I am very nervous about what kind of an impact that will have on the granulomatous mastitis. I did want kids eventually with all the problems I have had with my health lately I am scared my pregnancy won't be healthy. Still getting abscesses about once every two weeks and the initial incision still drains constantly! jusst keeping my fingers crossed everything works out for the best for all of us!=)
It would be interesting to have known what your levels were like when this all started.. How long ago was it now? I hadnt heard of benadryl elevating prolactin levels-that is interesting. do you know how much it can elevate them? With the bromocriptine I experienced severe nausea and fatigue-no hallucinations. With the cabergoline-nothing.=) I'm sure a lot of people do fine on the bromicriptine-its actually used for parkinsons patients at a higher dose so its pretty common and as far as I know pretty well researched. My prolactinoma did show up on the MRIs (I have then every4-6 months). Its .9 by 1.2 cm.
I find it hard to believe that the bloody nipple discharge was unrelated-everytime I tell a doctor about my prolactinoma they always ask about nipple discharge so Im sure there is some connection there.
Things with me are a little scary-Just found out I am 10 weeks pregnant. Although I'm excited I am very nervous about what kind of an impact that will have on the granulomatous mastitis. I did want kids eventually with all the problems I have had with my health lately I am scared my pregnancy won't be healthy. Still getting abscesses about once every two weeks and the initial incision still drains constantly! jusst keeping my fingers crossed everything works out for the best for all of us!=)
Suzanne,
Thanks for sharing that with me. I was really wondering about treatments, etc. I haven't seen my Dr. since I got the results; I have an appointment this week. I take Benadryl daily to help me sleep, and I read that antihistamines can elevate prolactin levels...if I had known that I would have skipped the Benadryl for a few days. I wonder how much of a difference that makes. I believe my level was 47 or 49. I can't remember which. I wish that my levels had been taken when all of this started. Now that I am doing better, I wonder if my levels are lower than they were when my symptoms were worse. The year before my GM started I had abnormal bloody nipple discharge in my other breast, and I had to have surgery to have a duct removed. Supposedly the two are unrelated, but I don't believe that is true. I would be interested in possibly trying a medication to lower my levels. It seems like there are a lot of side effects - hallucinations, etc. Did you experience that? Did your prolactinoma show up on MRI? I just had a brain MRI that nothing showed up on, but the tech told me that there are more specific MRIs that focus just on the Pituitary gland.
I will be interested in what my doctor has to say. I absolutely think that this is all related.
How have you been doing lately?
Jennifer
Thanks for sharing that with me. I was really wondering about treatments, etc. I haven't seen my Dr. since I got the results; I have an appointment this week. I take Benadryl daily to help me sleep, and I read that antihistamines can elevate prolactin levels...if I had known that I would have skipped the Benadryl for a few days. I wonder how much of a difference that makes. I believe my level was 47 or 49. I can't remember which. I wish that my levels had been taken when all of this started. Now that I am doing better, I wonder if my levels are lower than they were when my symptoms were worse. The year before my GM started I had abnormal bloody nipple discharge in my other breast, and I had to have surgery to have a duct removed. Supposedly the two are unrelated, but I don't believe that is true. I would be interested in possibly trying a medication to lower my levels. It seems like there are a lot of side effects - hallucinations, etc. Did you experience that? Did your prolactinoma show up on MRI? I just had a brain MRI that nothing showed up on, but the tech told me that there are more specific MRIs that focus just on the Pituitary gland.
I will be interested in what my doctor has to say. I absolutely think that this is all related.
How have you been doing lately?
Jennifer
I also have had elevated prolactin levels. When i was 20 I was diagnosed with a pituitary prolactinoma causing my prolactin levels to be quite high (200 at the time I think). I have never had children. When I first started having symptoms in my breast just this year, my family and I initially thought it was due to the prolactin levels. However, the doctors I saw said most likely it wasn't becuase 1) by that time my prolactin had been lowered by medications to only around 7 and 2) they said if it were related to that then it would affect both breasts. I didn't realize that other people on the forum had high prolactin as well. Depending on your levels there are medications you can try. I started with bromocriptine but was not able to tolerate it and had to be switched to cabergoline, which I did much better on. Do you remember your levels? What did your doctor think was causing the elevation?
Good luck with everything-Glad to hear you are feeling a little better!
Good luck with everything-Glad to hear you are feeling a little better!
Yes, women here have had prolactin tested and was not elevated - cwall was one I think.
I never had, but remember I have never had children.
Prolactin has long been implicated, as well as hormones, birth control pill use, reaction to foreign body (nipple is an entryway in to the body and most cases follow breastfeeding, even if by a few years)...
I am updating my website and will try to post more arcticles that reference this prolactin elevation.
Jo
I never had, but remember I have never had children.
Prolactin has long been implicated, as well as hormones, birth control pill use, reaction to foreign body (nipple is an entryway in to the body and most cases follow breastfeeding, even if by a few years)...
I am updating my website and will try to post more arcticles that reference this prolactin elevation.
Jo
Thank you, Jo!
I had never seen your Wikipedia entry - the first time was a few days ago when augustsunbaby posted it here. It mentions a lot about prolactin levels. I don't remember that being an important componet of GM when I originally did my reading and research...but maybe I just didn't focus on it because I didn't know that I had elevated levels then? I'm not sure : ) Anyway, I never focused on it until now.
Anyway, I was thinking that maybe it is really important. There are medications that are used to treat elevated prolactin. Have you heard of any of those being used to treat GM? I am so curious as to whether or not this could be a key to helping some or all of us. Do you have any thoughts?
Do you know if there are women who have had prolactin tested, but did not have high levels?
Thank you again for your help and support,
Jennifer
I had never seen your Wikipedia entry - the first time was a few days ago when augustsunbaby posted it here. It mentions a lot about prolactin levels. I don't remember that being an important componet of GM when I originally did my reading and research...but maybe I just didn't focus on it because I didn't know that I had elevated levels then? I'm not sure : ) Anyway, I never focused on it until now.
Anyway, I was thinking that maybe it is really important. There are medications that are used to treat elevated prolactin. Have you heard of any of those being used to treat GM? I am so curious as to whether or not this could be a key to helping some or all of us. Do you have any thoughts?
Do you know if there are women who have had prolactin tested, but did not have high levels?
Thank you again for your help and support,
Jennifer
Hi -
just a note that when I was looking back through posts I noticed Tiffany328 had posted on elevated prolactin level findings she had...pretty sure there have been others as well
hope you are feeling well,
Jo
just a note that when I was looking back through posts I noticed Tiffany328 had posted on elevated prolactin level findings she had...pretty sure there have been others as well
hope you are feeling well,
Jo
My thoughts and prayers are with you.... And thank you for updating your story. I can completely relate to not having medical care and basically letting the chips fall where they lay.... I'm sorry that you have so much else going on in your body besides just the gm affecting you.
Thank you for sharing what research you've found out, and hopefully it helps others as well.
Unfortunately in talking with my surgeon who's a extremely good breast specialist in the known area that he lives- he was telling me how on average he normally operates on a gm patient every 3 to 4 yrs. He said that I was the worst case he had seen in a long time, but on average most of them end up having hemi or lat removals versus bi lat mastectomies. With what he knows on it he said that really the only way to know for sure to get rid of it is to cut out the infected area whether its inflammation or lumps or the entire tissue itself depending on severity.
And he was NOT gung ho to cut on me let's make this known- he said most of the time when your body doesn't break it down and it becomes chronic swelling and pain or lumps that don't go away and swell to masses etc' is when women finally go I can't take this- cut it out. And in my case it was just plain for sanity purposes' lol.
It makes somewhat all the sense in the world with the women in china bc you have to look at their diet and excercise and wow I'd be interested to read on all of that and if they took herbal supplements. But their whole diet and excercise structure is completely different from ours. They normally eat mostly rice and veggies little chicken or any meat and I wonder how much else is different? I know on average they don't get more than 6 hrs sleep normally ( a friend or mine lived in china for a while).
Anyway, I hope some of what I had to say helps. You are an amazing woman- and a very good quote- "a strong woman fears nothing but a woman of strength shows courage in the midst of her fear".
God Bless- Gabrielle
Thank you for sharing what research you've found out, and hopefully it helps others as well.
Unfortunately in talking with my surgeon who's a extremely good breast specialist in the known area that he lives- he was telling me how on average he normally operates on a gm patient every 3 to 4 yrs. He said that I was the worst case he had seen in a long time, but on average most of them end up having hemi or lat removals versus bi lat mastectomies. With what he knows on it he said that really the only way to know for sure to get rid of it is to cut out the infected area whether its inflammation or lumps or the entire tissue itself depending on severity.
And he was NOT gung ho to cut on me let's make this known- he said most of the time when your body doesn't break it down and it becomes chronic swelling and pain or lumps that don't go away and swell to masses etc' is when women finally go I can't take this- cut it out. And in my case it was just plain for sanity purposes' lol.
It makes somewhat all the sense in the world with the women in china bc you have to look at their diet and excercise and wow I'd be interested to read on all of that and if they took herbal supplements. But their whole diet and excercise structure is completely different from ours. They normally eat mostly rice and veggies little chicken or any meat and I wonder how much else is different? I know on average they don't get more than 6 hrs sleep normally ( a friend or mine lived in china for a while).
Anyway, I hope some of what I had to say helps. You are an amazing woman- and a very good quote- "a strong woman fears nothing but a woman of strength shows courage in the midst of her fear".
God Bless- Gabrielle
THANK YOU! I love knowing how it is all working out for you. I didn't have the back bone for the course you have chosen. I admire you for your course of action. I commend you for taking advantage of this window of opportunity to check in and see what it looks like under the skin. We never really know.
I have really fallen off these past few weeks. My anti-inflamatory diet has gone to pot. Not that I am eating crap...but coffee, chicken & supreme pizza have been consumed more than a few times. I even had steak the other day.(I am writing this off as a side effect of steroids, I am hungry) And I forgot to take my pro-biotics with when we went on vacation.
Now that I have an apt with the Rheumy, he told me to stop weaning from the prednisone and stay at the 20mg till my visit with him (next week). I know he will start me on Methotrexate...and I am trying to fortify myself for this. I have a lump that is growing and getting quite red on the right side of my right breast. I think that will be good for him to see. Otherwise all he gets to see are scars of old wounds. Amazingly, since I stopped the anti-biotics I have been pain free. I am still pain free...inspite of my lapsed behavior.
Again, thank you so much for letting us know how your chosen course of management is working out.
I have really fallen off these past few weeks. My anti-inflamatory diet has gone to pot. Not that I am eating crap...but coffee, chicken & supreme pizza have been consumed more than a few times. I even had steak the other day.(I am writing this off as a side effect of steroids, I am hungry) And I forgot to take my pro-biotics with when we went on vacation.
Now that I have an apt with the Rheumy, he told me to stop weaning from the prednisone and stay at the 20mg till my visit with him (next week). I know he will start me on Methotrexate...and I am trying to fortify myself for this. I have a lump that is growing and getting quite red on the right side of my right breast. I think that will be good for him to see. Otherwise all he gets to see are scars of old wounds. Amazingly, since I stopped the anti-biotics I have been pain free. I am still pain free...inspite of my lapsed behavior.
Again, thank you so much for letting us know how your chosen course of management is working out.
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