PMR and Breast Pain

[040547RJH]

I was diagnosed with GCA in 2016 and after many failed attempts managed to gradually reduce the steroids. Recently, I was diagnosed with PMR and am currently taking 10mg prednisolone. I have an ache from under my arms down into the side of both breasts. The left aside is worse than the right. I have self examine and there are no lumps. Even wearing a bra is painful. Is this a usual symptom? Advice please .

[DorsetLady PMRGCAuk volunteer]

It is mentioned at times… and although it might be quite innocuous you probably need to get it checked out by GP.

[040547RJH in reply to DorsetLady]

Thank you. I have booked an appointment to see my GP.

[PuttyPenguin]

You definitely need to see doctor. My story is that after my first major flare-up and put back on high doses of Pred, I had the same symptoms. I saw a 'breast' man privately and he told me that the flare-up had triggered menopause again. Quelle joy! This might be the same for you but it is imperative that you see a doctor!

[040547RJH in reply to PuttyPenguin]

Thank you. I have booked an appointment to see my GP.

[ncfaaeos]

Please see a doctor. My GCA, first diagnosed as temporal arteritis, was found later also to be in my aortic area and, by the time this was discovered, it had caused two small aortic tears (b-dissection).

[040547RJH in reply to ncfaaeos]

Thank you! I have booked an appointment to see my doctor.

[Gimme]

I've had breast pain and got it checked out at the breast clinic, though in my case, I believe it to be nerve pain due to arthritic joints in my spine, as they did not find anything. Mine was different to how you describe, I had twinges that were most definitely felt in the soft tissue of the breast and they started right after starting on pred and continued for a few months.

It's important to bear in mind that anything heart related can give atypical symptoms, especially in women "of a certain age". Most likely it is nothing, but it is wise to discuss with your doctor to rule out anything more serious. Then you can put your mind at rest.

[040547RJH in reply to Gimme]

Thank you! I have booked an appointment to see my doctor.I also have arthritis and osteoporosis in my spine, so it is possible this is referred pain from my back. I will also book an appointment to see my chiropractor.

[Gimme in reply to 040547RJH]

Good that you are getting it checked out. I struggle with the random nature of having PMR too. New things seem to appear and I have no idea if they are related to the original condition or the pred, or maybe they are just random.

[Bluey-1 in reply to Gimme]

It’s the same with GCA. Are things connected? Impact of Pred and other meds? The up and down nature of fatigue. There’s no logic at all and looking for patterns seems pointless. I’m in no pain, CRP/ESR low and tapering going fine but I have ‘off’ days of fatigue after restless sleep (at least I’m getting some now!) that are just random. Makes it difficult to plan. 18 months on and I think folk expect me to be ‘better’. In truth I’m much improved on lower Pred but other conditions have emerged and the confusion as to what’s going on in my body continues. I know it’s day to day - or at least now week to week but what I’d give to confidently plan a social life knowing I’ve energy to enjoy it without the inevitable pay back.

[040547RJH in reply to Gimme]

I agree. I can cope with the symptoms of GCA because they are quite specific, so I know when I'm having a flare up, but as you say, the symptoms of PMR are random - is it or isn't it???

[Gimme in reply to 040547RJH]

Rightly or wrongly, I think that it is all somehow connected to the underlying auto immune activity. I think that I have had undiagnosed PMR for a very long time, so I can't blame it all on the pred as I only started it in Feb 2023. I have had random symptoms that I would never have connected otherwise, but when I found this forum and saw that so many other people are experiencing the same kind of issues that I have had, that I realised that it must be connected. Especially when I relate it to the health of people I know of my age, who do not have PMR and they do not experience all these random symptoms. That tells me that it can't be just age related.

Though, it is a common problem with people who have a chronic condition that you can have co-morbidities that may be missed, due to a crossover in symptoms. Since the main cohort of patients with PMR/GCA tend to be older (even if we already know, by no means all are older), there is a higher likelehood of having other conditions in addition to the PMR, so it is always a good idea to get it checked out just to be on the safe side.

As Bluey describes, the fatigue coming and going is one that I have experienced, and it has not been related to the pred dose. I felt absolutely crap during the summer and then suddenly in September, I started to feel a lot better. I've just had a holiday with everything that was wrong; enforced physical activity, long haul flights, jet lag, lack of sleep, no time for my mid-day nap, long periods sitting in cramped vehicles and paradoxically for the last 2 weeks since I got back, I feel better and more well than I have done any time in the last 2 or 3 years. The only difference medication-wise is that I have been taking the Aldi version of Berocca, which contains the micronutrients that are involved in the metabolic energy pathways. Surely, it can't be as simple as that? Whatever the explanation, I intend to enjoy the good patch, for as long as it lasts.

[Bluey-1 in reply to Gimme]

You give me hope!

[DorsetLady PMRGCAuk volunteer in reply to 040547RJH]

This picture shows where you can be affected by PMR - so more than you may realise

PMR areas affected

[Gimme in reply to DorsetLady]

That's a really helpful diagram DL. I have a lot of back involvement, more than my shoulders. Interesting. Though on the diagram, it does not show anything on the thighs and my hip pain extends down into my thighs.

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

Yes it is for upper body areas -there may be another that one shows more on legs (although this does show upper thighs as well) , but for this query it fits.

As we know there seem to be so many parts of the body that are affected by PMR -and different medical people have differing views -I have a look a see if I can find one that shows more of legs/feet! 😊

[Gimme in reply to DorsetLady]

Thank you DL. I think that so many healthcare professionals need to listen to their patients more. They might learn something. It has been an ongoing complaint of mine over the last months. And this forum is such a valuable treasure house of patient experience and I have seen other people in the group mention this too.

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

This one more like you?

PMR areas2

[Gimme in reply to DorsetLady]

yep, the legs are and the front of the neck. Though I seem to have got off fairly lightly with the shoulders and arms so far. The back on the earlier one you posted is exactly like me though.

[Gimme in reply to DorsetLady]

In fact, I'm going to print that off next time I see the doc and take it with me. That visual has far more impact than you could ever describe with words and it might head off the eyes glazing over as you reel off the long list of where it hurts.

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

Always worth a go!😊

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

Just for info, the first one comes from the Cleveland Clinic [US]....not sure about second but this is from Australian physio site - just in case doctor thinks the are made up!...

PMR areas

[Judyliz]

Hello, I too was diagnosed in 2016 with both PMR and GCA. I have had breast discomfort and sometimes real pain since I was 27. I had a fibroadenoma removed and over the years a number of cysts drained. The only time I have not been aware of it was when I was breast feeding. It is much worse in my right breast and for the last 8 months or so, like you under my arm is very tender.Again, like you I can't feel any lumps. I have been putting the recent increase in pain down to a right rotator cuff problem and probable nerve damage. I am seeing a physio.

Anyway, the reason I am writing to you is that 2 weeks ago I decided enough of this, I need to know and be sure.

I did an e-consult, GP phoned me back the following day at 9 am, over the phone she agreed I needed to be referred and 8 days later, last Saturday, I had a mammogram and scan. It is all clear, I am particularly lumpy, which I know.

So, please like me, do contact your surgery and I am sure you will have a similarly quick response. You need to know.

Over the years I have asked various consultants and specialists about the cause of constant breast pain for some of us. They don't appear to know. I have tried evening primrose oil and 3 years of tamoxifen, neither of which made any difference. I know I have to accept it as normal for me.

The interesting comment made by the consultant this time was to massage my breast with something like voltarol. I have bought some, but it is probably too soon to know.

I suspect those of us with constant breast discomfort and pain tend to be so relieved when we receive the positive information at the hospital appointment that we don't pursue it any further. I am sure there will be some specialist nurses and consultants who are aware of how debilitating breast pain can be but they are so very busy and we are not a priority. Which is fine.

My only other comment is, do make sure you have a properly fitting bra, preferably not underwired, not too tight or lose. Some of the big chains are very poor at fitting and it is well known that we women are particularly bad at measuring ourselves.

Enormous good luck to you.

[040547RJH in reply to Judyliz]

Thank you for your comments. I have booked an appointment see my doctor and I'm hoping he will refer me for a mammogram, just for reassurance.I also have issues with my back, so will also book an appointment to see my chiropractor to rule out referred pain from my back.

When I was going through the menopause - many years ago now - I tried Evening Primrose Oil, which was all the rage at the time, but like you, didn't find it very effective. I then tried Starflower Oil which for me worked well, but of course, everyone's different.

I don't wear a wired bra, but when I'm at home I just take my bra off!! What a relief!

Thank you again for your advice. I hope things improve for you.

[Stills]

note I do not have PMR but my diagnosis is Adult Onset Stills Disease which for me manifests as rheumatoid disease with some symptoms that overlap with those of PMR and Lupus. I do have upper arm pain in the muscles and shoulder/neck stabbing pains and flank and rib pain which can be intense and soft tissue breast pain with palpable lumps. Apparently these are swollen cartilage, but are very painful and all bras hurt. The last time I’d spoke to a GP about it they just shrugged so I can only offer empathy and say that after many years of this they haven’t got much worse thankfully. My mammogram is clear.

[040547RJH in reply to Stills]

Thank you for your comments.I have booked an appointment to see my GP and hopefully he'll refer me for a mammogram just for reassurance.

[Nightingales]

I have had breast pain and a rash that looks like inflammatory breast cancer for two years now. I haven’t been able to find a reason. The dermatologist says it’s an aotoimmune condition probably related to PMR. My rheumatologist is not interested, says it’s for the dermatologist. The two week referral to the breast clinic was fine, mammogram clear and referral to the dermatologist for a biopsy which came back as Livedo reticularis. I have noticed my local hospital now has a breast pain clinic. That might be a resource for you. I could ask for a referral but quite honestly I am struggling with so many things at the moment I just procrastinate.

I suspect LVV because it came on when I had a flare with high inflammatory markers, but my rheumatologist will not do a PET Scan until I am on 5 mg Prednisolone. I am on 10.5 and struggling to taper. So presently I just cope with it along with all the other pains and I am the crazy lady who always wears a scarf for modesty as I can’t bear to wear a bra. I am sorry you have this and empathise, the aching and sharp pains are quite wearing.

[040547RJH in reply to Nightingales]

Thank you for your comments.I've booked an appointment to see my GP in the hopes that he will send me for a mammogram.

My inflammatory markers are quite high at the moment, but I'm assuming that's the PMR. I'm also struggling to come down on pred. Currently on 12mg.

I only wear a bra when it's essential - a scarf is a good idea !

I do hope your pain eases soon. It's difficult to explain to people that you have toothache in your breasts!

[Stills in reply to Nightingales]

I’m sure you will have thought of this but…… well known high street clothes store sells stretchy crop tops like mini vest bras. No wires or clasps and I can get them on and off over my hips which is great with stiff shoulders. They also do a fancy range of bralets but I find these less easy to get on. Last year they sold what they called ‘sleep’ tops which offered comfortable coverage. They also used to sell camisole tops with a support shelf within, also a style I could step into rather than struggling with over head things. I’m a 32 E and find the small a hood fit. I continue with the ‘bra’ thing for warmth more than anything.

[Nightingales in reply to Stills]

Thank you! Yes, they are great but I have awful rib and thoracic spine pain and can’t stand anything except a vest. I am all about comfort now so I just go for clean and tidy now (and I don’t always accomplish that

[Nightingales]

I think a mammogram is essential. Pain may qualify you for a two week referral. I think you can also request a mammogram yourself. nhs.uk/conditions/breast-sc....

[Gimme in reply to Nightingales]

I was seen very quickly when complaining of breast pain and with no sign of lumps. It was a matter of days.