Connect
Vasculitis or connective tissue disease breast involvement?
I'm a 32 YOF, still in the process of being gaslit, er, I meant diagnosed. I'll do my BREAST to tell my story quickly lol.
About a month ago, my breasts started getting insanely itchy out of nowhere. It would just come in sudden bursts, mainly near the area where my normal skin meets the areola. If I give in and itch even lightly, the blood vessels would burst under the skin in a really dramatic way that is unusual for me. Around the same time the itching started, I began feeling super engorged randomly, no matter what part of my cycle I was on. I hadn't breastfed since March of 2022. I showed my hematologist the broken vessels and she had literally zero feedback. I felt really stupid for even bringing it up to be honest. But then a few days later, I had what looked like milk come out when I gave my husband a hug in the morning before he left for work. There was so much that it transferred through my tank top and onto his shirt. I thought it was super odd and I felt some tenderness in both breasts. Later that night, I saw yellow discharge just sort of "hanging" from my nipple. I gave a very light squeeze and blood started coming out. Since then (a couple of weeks ago), I've had every color of discharge come from the same nipple: white, yellow, blood, pink, clear. It's all been spontaneous besides that first time I gave it a little pinch. Sometimes both nipples themselves are tender, sometimes I have crazy engorgement feelings (usually after eating or drinking black coffee). It waxes and wanes and sometimes the feelings are very mild and in the background. The itching comes in short, random bursts as well.
I had my prolactin and TSH checked, both very boring and normal. A mammogram and ultrasound last Friday showed no mass, no obvious duct issues, or anything else of note. What I found odd and let the doctor know is that when they did the mammogram with all the squeezing and pulling and smashing, I had no issues at all. But when they did the ultrasound with the warm gel and very light doppler pressure, that triggered the engorgement and discharge.
Because all of my breast symptoms came about at the same time other systemic symptoms popped up for a particularly nasty flare, I'm convinced this is connected to the autoimmune stuff, but I can't get a single doctor to listen. The breast specialist actually said as she was going over my "normal" imaging, that sometimes these things just happen...like am I insane? I literally want to scream or cry or both? In what world is this normal?
Anyway, I'm sure it's not common, but I'm hoping someone else can relate and help me understand what's happening? I think the next step is an MRI, but that's IF the doctor agrees and my insurance will cover it. I did have my ANA turn positive in November, but Rheumatology is pretty uninterested because it's only 1:160 and Wash U says that isn't clinically significant to most rheums. I have RNP ab (2.4 and 2.2 at two separate labs a few months apart), a very mildly elevated CCP once that's since turned negative, and slightly elevated Tgab with normal TPO and thyroid function. I've had a whole lot of abnormal labs in my CBC and CMP over the last 7 years, but nothing enough to get anyone's attention except for in 2019, a few days post delivery of my first son, I needed three units of blood transfused when my hemoglobin dropped to a 5.6 with no hemorrhage. I had what they referred to as "mild preeclampsia", but it was just chalked up to a weird postpartum thing. I also had slightly elevated NRBC's during a severe flare up last January, but since they haven't been abnormal on follow up labs, it's been dismissed as well.
If there's any other info that would be helpful, I'm happy to share it- just didn't want to yap your ears or eyes off!
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
@akerslauren, I like your sense of humor…
Your title mentions Vasculitis. If you’re thinking you may have Vasculitis, do you know which one? There are at least 15.
Itching and discharge from the breast are 2 of the symptoms of possible breast cancer of course.
Could it be that you are pregnant?
Are there crying babies around you?
Maybe you can keep a journal of what you eat
And a separate journal for the fabric, soap, shampoo you are using
Why does the itching, etc. stop? What is happening when it goes away?
An Endocrinologist, or a Dermatologist may be able to help.
-
Like -
Helpful -
Hug
2 Reactions@SusanEllen66 thank you, I get a real kick out of myself sometimes hahaha.
I’m not sure of course, but I’m thinking small vessel? I actually think that I’ve been having mild attacks that eventually spontaneously resolve briefly over this last year. Last January, I had severe lower back, lower abdomen, and bladder pain. It would get worse with food, drink, or AFTER urination. I had intermittent microscopic blood in my urine but no infection per urinalysis. I had an enlarged lymph node, but no other abnormalities on the CT scan. It felt like someone had scrubbed my insides with a Brillo pad because everything felt so inflamed. My NRBC’s were elevated at the time as well as liver enzymes. I was in agony for most of each day for a month unless I kept heat on my lower abdomen and back, no meds gave comfort. The repeat ct scan to check on the lymph nodes a few months later showed no enlargement, but just numerous, scattered lymph nodes that were remarkable to my doctors, though they didn’t know what to make of it. They eventually went away.
I’m honestly not sure what’s triggering the breast discharge, it is happening spontaneously and I’ll find it in my bra when I undress or see it coming out as I undress. Heat from the shower and even the warm Doppler gel usually prompt the engorged feeling, though that also happens randomly as well. I’ve noticed drinking my normal daily cup of coffee triggers it (usually) and also while I’m eating.
My breast ultrasound and mammogram looked great they said, but they were just investigating for masses. I noticed a decent amount of red on the ultrasound imaging that wasn’t mentioned, even though it was directly behind the bleeding nipple.
My endocrinologist more or less told me “good luck” when I told her Prolactin was normal 😂😭. My rheumatologist also told me it was an OBGYN issue and not at all related to rheum. I admit, I wouldn’t have initially thought it was connected to the rheum but I had all my “bad” flare symptoms pop up at the same time this started.
No new soaps or laundry products and I have no idea what is going on with the itching! It’s so bizarre because of how quickly it starts and stops. It seems to happen at night more often that during the day.
-
Like -
Helpful -
Hug
1 Reaction@akerslauren in my opinion, you need to be on prednisone.
I think you need the medication to calm all the issues that you are dealing with.
Then, perhaps you and your doctors can better understand what is going on with you.
Has anyone considered Lupus, or Lyme disease?
Hopefully, that awful pain doesn’t return, if it does, my recommendation would be to go to the ER. They may have some answers.
You obviously have done lots of research on your own. Generally, health care providers are not happy about patients getting their information online.
Just go to the appointment, state your symptoms, and let the doctors decide what is going on.
Please keep us updated. Blessings
@SusanEllen66 I asked my rheumatologist on Thursday about trialing a short taper course of prednisone, but she said they don’t like to do that until a diagnosis is clear. My labs just came back, but nothing super helpful in pinning down what this is. My ANA somehow went DOWN to 1:80 homogenous. I’m sooooo annoyed because I already know she’s going to tell me that it isn’t clinically significant if they don’t view my previous 1:160 as meaningful. RNP ab are still positive, but now rheumatoid factor is also a little elevated (10 with a reference range of 6). ANCA totally negative though. I’ve literally never felt worse in my life, and that’s including post childbirth. I’m used to feeling crappy at this point, but it’s on another level. That’s the only reason I’ve researched anything, really. I’m just desperate for an end to all of this. It’s like as soon as I get adjusted to living with one group of symptoms, another group pops up in addition to or in place of. I’ve been to so many appointments lately and really hope it doesn’t come down to the ER!
Thanks for your time and insight < 3
-
Like -
Helpful -
Hug
2 Reactions@akerslauren research something called TRAPS. Someone on here just wrote about it. It’s a rare inflammatory disease.
@akerslauren 2nd message.
Thank you for thanking me for my time. My clock is ticking slowly now, and soon the alarm will ring and I will fall asleep.😴
-
Like -
Helpful -
Hug
1 Reaction@akerslauren you really need another Dr.
-
Like -
Helpful -
Hug
1 Reaction@SusanEllen66 that’s so strange! The first rheumatologist I saw mentioned that at one point, but I think it was decided against because I don’t run high fevers. I very frequently feel feverish and sometimes run low grade fevers during these episodes. I’ll look into it some more, though. I’m not ruling anything out until we figure something out!
@taylor05 amen! But I’m finding out over the years, particularly this last year, that there are so few doctors equipped to deal with patients that aren’t textbook. You’d think that sort of thing would be more up rheumatology’s alley, but not that I’ve experienced so far. My rheumatologist just messaged me this morning to go to the ER. I guess she was tired of me messaging her with updates on my symptoms. She told me that she wasn’t convinced that the new rectal bleeding and ulcer on my vagina that popped up in the last few days are related to rheumatology. So I just finished having to try and explain a complicated medical history in the most condensed, pertinent way to an ER doctor that most certainly does not give a hoot about an autoimmune patient that is not actively dying lol. Once my bloodwork comes back normal, I’ll be spinning my wheels again and seeing what the next hoops I need to jump through in order to “prove” that I’m ill. It’s so freaking exhausting and degrading.
-
Like -
Helpful -
Hug
1 Reaction@akerslauren
Well you need to get another Rheumatologist. I see a Neurologist at John Hopkins and my Rheumatologist seems engaged and trying to help me find more answers. I'm still going to find one at John Hopkins though. I have so many autoimmune diseases plus!! Good luck to you!!