Anyone have mastitis and/or mastalgia as a sympto... - LUPUS UK


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Anyone have mastitis and/or mastalgia as a symptom of lupus?

Spicer21 profile image


I've not been diagnosed, but suspect that I have lupus - amongst other things I have photosensitivity and an intermittent red and hot flushing across my facial cheeks and nose (but private blood testing hasn't proved positive). But my question is...

Has anyone had mastitis and/or mastalgia post menopause and suspected it to be associated with their lupus?

It's something that I'm experiencing at present. Both breasts are involved and have flared up badly 3 times over the last 8 months. I've been referred to the local NHS breast clinic and had mammograms and ultrasound scans, but they can't find anything sinister going on and won't/can't give me a diagnosis. The surgeon I saw said that he believes that is all down to inflammation rather than bacterial infection (although I've had to take antibiotics with each flare in case of secondary bacterial infection). From what I've read, it could be peri-ductal mastitis, however, the instances of mastitis have tied in with my facial flushing/redness appearing...

Having scoured the Internet I know that there is such a thing as 'lupus mastitis' which is apparently rare, but my symptoms don't fit it as I don't have any defined lumps. I understand though that lupus inflammation can affect any organ, so I was wondering if anyone else had experienced this at all as part of their lupus symptoms.

Thanks in advance for any thoughts and/or experiences.

8 Replies

Interesting this, because I've had some breast pain and a sore soft lump which then disappeared (( wasn't worried about anything more serious). I'm in the menopausal area.

It was unusual for me because pre-baby I used to get a lot of lumpyness and breast pain, which disappeared when I breastfed. Plus diet changes seems to make a difference to my hormonal issues.

So there might be something in what you say. What they'll do about it I don't know.

Spicer21 profile image
Spicer21 in reply to Treetop33

Hi Treetop33,

Thanks for your reply.

Throughout my life I too have noticed that diet has affected my breasts...and, more recently, if I try to supplement vit d3 (blood tests have shown that I'm vit d deficient) my breasts react by hurting like hell, no matter the dose or brand of vit d3 I take. An attempt to supplement vit d3 may have triggered the very first bout of mastitis that I experienced back in March this year - However, my breasts have since flared up twice and are currently hurting without any attempt to supplement vit d3 or without any particular change of diet.

Like you, I have also been wondering about the hormonal side of things. Being 10 years post menopause, I thought that it couldn't be anything to do with my progesterone and oestrogen levels but, having done some research (on the Internet and in a text book about benign breast diseases) I have gathered that the progesterone levels, having dropped dramatically at menopause, can keep dropping and, although oestrogen levels drop too, they don't usually drop to the kind of extent that progesterone does - and this relative 'oestrogen dominance' can apparently cause inflammation, which in turn causes mastalgia. I'm experimenting with using some Wellsprings progesterone cream (other makes are available, but a friend uses Wellsprings for her menopausal symptoms as it's supposed to be bio-identical) to see if it will help; it's early days as yet, but I'll post up with my experience of it in due course, if you'd be interested.

I'm also taking some vitamin B6 to see if it will lessen my symptoms; a urine test indicated that I have low B6 levels and there are some reports that B6 can ease mastitis (pre-menopause and circa menopause) and it apparently also has a prolactin lowering affect. Even if prolactin levels aren't high (I've had my level tested via Medichecks and they are 'within range' normal) breast tissue can react in an inflammatory way in response to the pooling of prolactin in the breasts (which apparently is always there to a certain extent, even in women who aren't breast feeding). The pooling can happen even if the breast ducts haven't widened at all (I've read that the widening can happen as part of the 'involution' process circa and post menopause, i.e. where the glandular tissue gradually shrinks and is replaced with fat).

Also with regard to hormones, I'm hypothyroid which is treated with levothyroxine and - although within range - my most recent thyroid hormone blood tests were lower than they've ever been since I started on levo, so I'm going to increase the dose a little to see if that makes a difference.

I've read that chasteberry can help reduce mastalgia and prevent mastitis, but I'm still looking into that and don't want to try too many things at once, especially as I have reacted badly to herbal supplements of one kind or another in the past.

It's all such a complicate issue and, despite the above, I still wouldn't be at all surprised if my breast problems are lupus-related.

Treetop33 profile image
Treetop33 in reply to Spicer21

I'd definitely be interested to hear the results of your experiments. It totally infuriates me that women's hormonal issues throughout their lives are never investigated or corrected by the medical profession. During the menopause they just look at you and shrug, while you are screaming at them "BUT what if there was something simple you could do it would radically improve the quality of my life...just do a blood test!"

Spicer21 profile image
Spicer21 in reply to Treetop33

Exactly my sentiments, Treetop33! I've ended up paying for numerous blood tests, when they really should have been ordered for me on the NHS. Also, the text book about benign breast disease that I've just read has me realise that there were things that they could have offered me at my local NHS breast clinic for the mastalgia and mastitis, e.g. bromocriptine or cabergoline or danazol...but, just as you describe, the breast specialist did nothing but shrug his shoulders...I didn't have cancer, so he wasn't interested in trying to help me :( (I would pursue trying to get these medications prescribed for me, but they can have quite difficult side effects, so I would be in two minds about taking them at this stage - but it would have been nice to have been offered them and had the choice!)

Also from the same text book, I've also been dismayed to realise that they generally won't do surgery on breasts to try and relieve chronic mastitis involving the ducts until a woman has suffered numerous abscesses and fistulas and taken course after course of antibiotics - So much for quality of life, eh?!

I will let you know if any of my experiments help.

I have had one sore breast for a few days now, mainly around the nipple. Thinking of seeing the GP to discuss. ???

Spicer21 profile image
Spicer21 in reply to vsapey

Hi vsapey,

Yes, if it were me, I would get it checked out, even though it could be something and nothing. I believe any changes, especially if they are affecting one breast and not the other, should be looked into..

If there’s any redness it could be peri-ductal mastitis, which is a benign condition, but all women should be aware that there is a form of breast cancer that causes pain and inflammation/mastitis, but with no lumps – albeit that it is quite a rare condition…I certainly didn’t know about it until I started researching into what could be causing my horrendous bouts of painful mastitis – inflammatory breast cancer apparently can look like harmless mastitis, but doesn’t respond very much, if at all, to antibiotics.

Also a friend of mine gave me what I think is a good tip and that’s to wear an old white or otherwise light coloured T shirt in bed, so that you can check it in the mornings for any spontaneous nipple discharge, which would otherwise probably go unnoticed – and, of course, if there is, it must be investigated.

When I’ve had breast pain (without mastitis) in the past, my GP did a full blood count tests plus a c-reactive protein blood test (the latter to check for inflammation) so hopefully if/when you go to see your GP s/he will do the same...

However, when my blood tests came back all okay, i.e. ‘within range’, my GP just sat on her hands and wasn’t interested in helping me get to the bottom of what was causing my mastalgia (each time I approached her about my breast pain I had not long had a mammogram done though - so I guess she could rest easy, safe in the knowledge that if something sinister was going on she couldn’t be accused of negligence).

A tip that I was advised to do at the local NHS breast clinic (after they had scanned me and found nothing sinister going on) was to use ibuprofen gel or Volterol gel on my breasts to ease the pain and inflammation. For me it worked a bit for the pain, but it did nothing to prevent two subsequent bouts of raging mastitis – And, having since read that NSAIDs can increase prolactin levels - which could be an issue in my case - so I’m not using any anti-inflammatory gel for the time being.

Do keep me posted with how you get on.

I've had this problem, too, in one breast, within the last 6 months. I'm post-menopause and when it started, I had re-started using estrace for vaginal dryness and I thought that's what was causing it so I stopped but breast pain continued. I had another mammogram (had one right before this problem started) and nothing came up. Also, an ultrasound but nothing. My labs have all been in "normal" range. Doctors don't know what it is. Just would like to's like a sharp pain in the breast tissue, correct? When it's bad, it can hurt just if I accidentally touch my breast with my arm. Just wanted to add my testimony to this very real problem for lupus suffferers.

Spicer21 profile image
Spicer21 in reply to ecough

Thanks for replying, ecough. I too tried estrace. I was prescribed it for vaginal atrophy and, although it's not supposed to effect the body systemically, it gave me horrendous back pain. I thought it was a coincidence, but every time I tried using it, exactly the same thing happened. (This was long before the mastitis recently struck me, during a time when I wasn't experiencing any breast pain either.)

My current breast pain is just as you describe, i.e. sharp, and definitely in the breast tissue, rather being 'referred' pain from elsewhere, like the chest wall. The pain fluctuates in intensity, but my breasts hurt every day. The odd thing is that they often don't hurt as much in the mornings as they do in the afternoons and evenings - the pain gets worse as the day progresses. Most of the time can't bear any pressure on my breasts at all; accidentally touching my breasts with my arms always hurts, so much so that it often brings tears to my eyes...

With me though, the breast pain has on 3 occasions suddenly turned into mastitis. What happens is that the chronic inflammation in my breast gets so bad that it puts pressure on the breast ducts and they burst, releasing their contents into the surrounding breast tissue; this causes my breast to go bright red and hot and hard - and all of this is accompanied with body aching from head to foot and chills (like the flu but without the nasal and throat symptoms). From what I've read in a text book about benign breast diseases, I understand that this is usually classed as being peri-ductal mastitis and eventually my ducts are likely to become fibrous and lumpy and, at the point of that happening, I will probably need an biopsy (because they can't tell from the scans the difference between that kind of benign fibrous lumpiness and some types of cancerous lumps). I have no lumps at present though, so only time will tell.

I hope your pain subsides and that you won't get any mastitis.

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