Strange Question: With this last flare, my doctor... - PMRGCAuk

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Strange Question

lovemylife23 profile image
15 Replies

With this last flare, my doctor has only allowed me to go from 8 to 10mg of Pred (I was tapering, but at 8 I had a terrible flare and just cannot get below that for now) I am still struggling with pain mostly from evening until morning after dose of Pred. We are waiting some test results to then add Kevzara to my regiment. She is very conservative with the Pred and wants me off ASAP.

My question is.... have any women had extremely sore breasts associated with PMR? I just had a mammogram, so that is out of the equation. I am 58 and post menopause . Pain is evenly in both breast and involves pretty much all breast tissue, even that under my arms. They feel like they did when I was a teen getting ready to menstruate!! They hurt to wear a bra or when my arms brush against them. So strange... could it just be related to the inflamation? I have Googled everything and can find nothing that isn't hormone related (I don't have those anymore haha).

Thank you for any input!

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lovemylife23
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15 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

It has been commented on in past - and had you put breast pain in the title it might have brought up related posts - there has been some discussion from Sungolfer recently so perhaps have a look at her profile - or she may reply as I've tagged her in this response.

-healthunlocked.com/user/Sun...

fmkkm profile image
fmkkm

Hi there, I googled around and did come up with this article. When was your last covid vaccine? Apparently women do report breast pain after vaccination.

healthline.com/health/breas...

lovemylife23 profile image
lovemylife23 in reply to fmkkm

Been a couple of years since vax and been boob pain free until recently! Thank you!

PMRpro profile image
PMRproAmbassador

It is all very well her wanting you off pred asap - but without Kevzara, the only thing managing the inflammation is enough pred and of you have flared at 8mg. 10mg isn't enough to sort it out. It isn't her call and frankly, I pity her patients if this is how she dealt with them pre-Kevzara. PMR calls the shots - it is the same when people say how wonderful their rheumy was and they did this speedy taper and it all went swimmingly so everyone else should do the same - they were lucky!

People do complain about sore breasts - I think I did but it is a long time ago and I'm sure it went once I was on pred. Are you pre, peri or post menopausal? I was defiitely peri-menopausal in the early days of PMR and that was causing some of the problems.

tempusfugi profile image
tempusfugi in reply to PMRpro

Yes, it's all very well being conservative and wanting a patient to be off Pred, ASAP, I spose the Dr doesn't realise that we'd like to be off the drug too!! Makes me mad. I wonder if the Dr would be so keen if she suffered from ongoing PMR...

PMRpro profile image
PMRproAmbassador in reply to tempusfugi

There was a doctor on here briefly and she admitted that she had a totally different view of using pred now she'd felt what it was like, Others on the forum have said they have a doctor who has at some point had to take pred and they were very different about how to use it. I met a rheumy at an OMERACT meeting who has an inflammatory arthritis - and said her diagnosis had changed her attitudes to patients in pain dramatically.

lovemylife23 profile image
lovemylife23 in reply to PMRpro

Thank you PMRpro, I am post menopausal. I have a CT scan scheduled tomorrow to check my sternoclavicular joint. She is concerned that there may be more going on than PMR! I don't think so as my symptoms are classic and I am otherwise healthy. She is firm in her belief that all patients should be off pred within a year (she has stretched to 18 months) If all is normal with the CT, she will add the Kevzara to then taper again off of the pred. She seems frustrated that I am not fitting the her model of PMR and timing. She admits that some people cannot taper below a certain mg by her deadline and at that point she introduced Methotrexate or now Kevzara. I have an appointment with her Wednesday to discuss CT results and Kevzara. I will discuss this continued pain at that time. Thank you so much for responding to everyone so quickly ❣️

PMRpro profile image
PMRproAmbassador in reply to lovemylife23

Dear dear - what a poor scientific mind she has! Does it not occur to her that she is very much the outlier?

Just for her consideration:

ncbi.nlm.nih.gov/pmc/articl...

The sternoclavicular joint is often "felt"by patients with PMR and there is confirmation in PET-CT scans:

onlinelibrary.wiley.com/doi...

"A maximum intensity projection showing uptake of the FDG (arrows) in the shoulders, sternoclavicular joints and tubular sciatica." Fig 3 legend

So while she may think it could be arthritis - it doesn't rule out PMR.

lovemylife23 profile image
lovemylife23 in reply to PMRpro

Wow, I consider myself pretty resourceful, but never could have found these articles - again, thank you so much!!

When I mention to my doctor that I have read studies showing that some take longer on steroids to wait out the remission, she says those studies must be old! She says all new research and practices are short term steroids then adding Kevzara or Methotrexate to the mix. She intimates that she is the "new" (because she is probably in her 40's) medical wave of treating PMR?!?!

I will update after tomorrow's test and her subsequent "diagnosis". Hopefully adding these experiences to the database for others.

PMRpro profile image
PMRproAmbassador in reply to lovemylife23

"She says all new research and practices are short term steroids then adding Kevzara or Methotrexate to the mix"

Rubbish, Kevzara has only been approved in the USA for a short time and is approved nowhere else - there is a whole wide world out there besides! It doesn't matter what new work suggests - how long PMR lasts doesn't change and it doesn't read their timetables.

And I can assure her that 2 of the top people in the world don't do either as a blanket process. Neither uses Kevzara because they aren;t in the USA and they use methotrexate on a selective basis. But as far as your lady is concerned, they probably don't even exist ...

Whatever drug is used, it doesn't cure the PMR. And they don't necessarily work the same for everyone. If she is only 40-ish, she has a lot to learn.

Sungolfer profile image
Sungolfer

hi and thank you to Dorset Lady for tagging me! I posted something similar not long ago- my sudden pain/soreness/tenderness near my right nipple came on over night! I loved with it for 2 weeks thinking it was some sort of trauma? It decided after 2 weeks to go to see GP - inconclusive as I had a breast reduction over 50 years ago so my boobs are very dense and lumpy, but he fast tracked me as my Mum had breast cancer.

Mammogram showed dense but not abnormal breasts. Great relief. So now at least 5 weeks and still sore. My conclusion in my case - slight breast enlargement due to Pred and something “tugging” on scar tissue near my nipple! Tender but no longer worrying!

lovemylife23 profile image
lovemylife23 in reply to Sungolfer

Thank you for your comment! Yes, it sounds like it is either the prednisone or the PMR. Since going back up from 8mg to 10mg I am really seeing the prednisone side effects I didn't have too much of over the last year at higher doses. It weird that now I am getting the moon face and weight gain and I didn't before at higher doses. I think that maybe the pred is causing it. I am fairly small breasted, but have noticed them larger now. Like you mentioned, could be the pred and weight gain. Ugh.... just another hurdle. I hope you are doing better and thank you for your response. I can't wait for this to be in remission and start living again!!!

cycli profile image
cycli in reply to lovemylife23

Not really a strange request for a female :-) As to the remission and getting back to living again, it's the wish of everyone. Having said that, the life you are currently living, whilst less than you would wish, is still a life. Whether or not you can reclaim your former life depends I think on how much you will have lost by the time remission comes. Make the most of what you can do

Aqua47 profile image
Aqua47

Your doctor doesn’t feel your pain, nor does he control your life. If I were you, I would find another doctor who would give me what I need to get out of pain. I hope you get relief soon.

cycli profile image
cycli

yoyoing from too rapid a reduction is worse. I wouldn't listen to your Dr. but take what is needed to control inflammation. When your pills are running low just request another prescription. Flares are bad and to be avoided. I would suggest to your GP that unless they can experience the pain they are in no position to dictate to you.

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