PMR & HRT?: Having been recently diagnosed - in... - PMRGCAuk

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PMR & HRT?

Whitner
Whitner

Having been recently diagnosed - in September 2019 and currently on 15 mg of prednisone, like others I am wondering why I have PMR. I purchased Kate Gilbert's book on PMR & GCA, which is a wonderful book I would recommend to everyone!! In the book Kate mentioned that she was on hormone replacement therapy (HRT) at the time of her diagnosis. I too at 66 years of age was on HRT. I am wondering if any others were also on HRT at the time of PMR diagnosis.

49 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

It’s a question we all wonder at the beginning - and very often all the way through!

Unfortunately there is no simple answer - it a complex subject - for everyone who was on HRT, there will be someone who wasn’t! Likewise for most things - except for stress - which is definitely a factor for most!

This may give you a few more ideas - but really no point in worrying why you’ve got it (although you may like to know out of interest) - you can’t do anything about it now.

healthunlocked.com/pmrgcauk...

Whitner
Whitner
in reply to DorsetLady

I just thought I would put the question out there DorsetLady and see what came back. It is such a strange illness and I am trying to figure it out. This website is such a godsend! I am taking HRT for osteoperosis which I am concerned about while on prednisone. With the HRT, calcium, walking and weights I was able to move back to osteopenia so that is nice but I keep wondering if I should stop the hormones but I want to help my bones. I am taking 1200 mg of calcium (time release) with D and magnesium I think.

Hidden
HiddenModerator
in reply to Whitner

You might want to take a look at this article. It does have the whole thing if you scroll through.

bmjopen.bmj.com/content/7/1...

Whitner
Whitner
in reply to Hidden

Thank you Poopadoops for the link, very interesting. Like everyone when I think back I believe I was “on the verge” for awhile and visited my chiropractor regularly and got massages when I could (yea!). But it wasn’t until a guy at a shopping mall ended my massage by pulling my arms back too far and the next day everything hurt!!! I could hardly get out of bed. Really scared me. Moving helped and so did Advil for a time. It is crazy stuff and I am very new to the learning curve 🥴

Hidden
HiddenModerator
in reply to Whitner

There are learning curves throughout. It did make me jealous at the thought of massage but I cringed at the pulling arms back bit! Ouchy!

Whitner
Whitner
in reply to Hidden

Ouchy for sure!

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Whitner

That's good. If you take Vit K2 that also helps with the absorption of Calcium.

Whitner
Whitner
in reply to DorsetLady

Thank you DorsetLady. I’ll make sure that’s included!

PMRpro
PMRproModerator

As I said on another thread - I wasn't on HRT at the time PMR started (that was 5 years before diagnosis!) but I had been on HRT and really well until about 5-6 months before the first signs of PMR. I have always wondered if PMR would not have shown up had I stayed on HRT.

I was osteopeneic on the dexascan 2 months after the first pred - and the bone density hadn't changed in over 7 years on pred. Suppose I need another dexascan, the last was 3 years past.

Whitner
Whitner
in reply to PMRpro

That’s good to hear that your bone density hasn’t changed! Probably due for another dexa though.

I have never been on HRT

Whitner
Whitner
in reply to Koalajane

Thanks for responding Koalajane!

HeronNS
HeronNS
in reply to Whitner

Me neither. But I had a period of time with a lot of stress leading up to the onset of PMR symptoms.

I started hrt in sep 2016 and was still on it when diagnosed with pmr 2 years (oct 2018) later. I dont think hrt was respsonsible for my pmr but wonder if it hid the pmr symptoms for a couple of years? I still.put my pmr down to the numerous shoulder surgeries and less than successful shoulder replacement. Who knows and to be brutally honest does it really matter? I have it, i have the drug that deals with it to allow me a relatively normal life and whilst the pred has side effects i can live with most of them and deal with others like weight gain by doing low carb. I know some people need to work out the why and when but for me all that matters is dealing with it. x YBB

That's true Yellowbluebell but I was thinking if the HRT got the PMR started maybe stopping HRT might stop the PMR.

Yellowbluebell
YellowbluebellModerator
in reply to Whitner

I have stopped the hrt now and unfortunately the pmr is still here. I came off hrt about 2 months ago but not noticed any differences. If anything changes i will let anyone and everyone know!! I suppose for some people it may well be something that starts pmr, there seems to be so many possible causes.x

It's funny because I had pain but there seemed to be a "tipping point" where everything went to hell in a handbasket and for me that was after a massage where my arms were stretched back too far. Prior to that I had bursitis in my right hip which was treated with a cortisone shot.

Yellowbluebell
YellowbluebellModerator
in reply to Whitner

I have had 8 operations on my right shoulder including the shoulder replacement. After about the 6th op i never felt completely right and spent so many hours ar the gp fir them to tell me it was just the ops that were causing the probs. After the 7th and 8th op which was my replacement things just got.worse and i was finally diagnosed with omr two years after my replacement. I have since had two more surgeries on my other shoulder so not expecting things to improve anytime soon!!

So sorry Yellowbluebell. I hope you feel better soon and don't require any additional surgeries.

Yellowbluebell
YellowbluebellModerator
in reply to Whitner

Oh i am sure there will be more as my joints seem to be an issue probably due to me playing professional hockey in my youth and swimming competitively. They say sport is good for you!! Hopefully you will be able to work out whst caused your. X

I have now been taking HRT (Premarin) for 49 years. I encountered GCA 37 years later. I am still taking HRT.

Bone scan 6 months after starting 60mg, bones 97% - then one every two years until the last one when GCA went into remssion after 5 years - bone density still 97% - it never moved.

I would be very wary of stopping your HRT. Your body is used to it and the PMR came along anyway and at present your body has enough to cope with, without making a decision to stop something you have been on long term and, perhaps run into withdrawal symptoms.

However the final paragraph is just an opinion, I have no medical knowledge, just a thought to share.

Whitner
Whitner
in reply to jinasc

Thanks jinasc, I'll stay on my HRT. So glad to hear from others that bone density has not been affected by prednisone!

Never been on HRT.

Hi Whitner. I was on HRT for about 10 years prior to developing PMR in March of 2018. I too have wondered if there could be a connection. It's difficult not to wonder about this. If we ever were able to figure out causation it would be very helpful in terms of preventing others from developing it.

Interestingly, like you, I was experiencing bursitis in my right hip (in Jan & Feb of 2018) and after trying a variety of pain meds unsuccessfully ended up having a cortisone injection. Shortly after this (about a week later) my entire body became wracked with pain rendering me immobile. When my husband got me to the doctors I was diagnosed with PMR. I've always wondered if that cortisone injection triggered something.

About a year ago the bursitis flared up again and this time my rheumatologist recommended a cortisone injection. I was desperate for relief and so agreed. But within a couple of days the pain spread into my lower back (sciatica? periformis syndrome? sacroiliac joint disorder?) which put me in much greater agony then I was experiencing with the bursitis. The lower back pain was with me 24/7 for the next 5 months. I don't think I will ever agree to another cortisone injection. But that's just me.

Whitner
Whitner
in reply to colmarin

I’ll certainly keep this in mind collarin. I felt fine after my shot. Totally relieved my bursitis. The PMR diagnosis came about a month later. Hmmm that’s pretty close. Hadn’t thought about that connection.

I think Kate’s book is great - I was 65 when diagnosed - took HRT from 42 to 52

I have been on HRT patches for 32 years

Stress for 2 years prior to diagnosis though 🙁

Whitner
Whitner
in reply to Bridge31

Sorry Bridge31. Hope things are better now.

Yes I was on HRT for much longer than normal due to an early hysterectomy and really bad mood swings every time I stopped it! But I’d been off it about two years when I had the PMR diagnosis. But think I’ve had signs of PMR for much longer, I’ve had shoulder pains for six months and thought it was either fibromyalgia which I’ve had eight years or pulled muscles from lifting suitcases badly on holiday. I guess nobody really knows all the answers. I’m very new to this site but think it’s fantastic and I’m learning so much here.

Whitner
Whitner
in reply to Pixix

I think this site is fantastic too!

I have been taking HRT for about 36 years. I was encouraged by the fact that Jinasc has been taking longer. I take patches and had been slowly reducing the size of the patch before I had PMR.

Since having PMR I continue to take the same amount of patch pre PMR as I didn’t want to alter anything else in my body so that I wasn’t sure what pains or symptoms were attributed to what.

I would say that I have had to fight many battles to stay on this dose of HRT as doctors and nurses have tried to insist that I come off it completely. This I explained doesn’t make any sense with my present condition of PMRGCA. That’s one of the reasons I was interested that Jinasc had been on it longer.

I had endometrial cancer in 2004, total hysterectomy. Cancer was estrogen caused so no HRT for me. So, not cause of the PMr/GCA, which has plagued me in one form or another for 20 years. I developed infections on Actemra, also felt better, then awful on Actemra. So stopped taking. I feel wonderful when I am on an antibiotic. I was recently given Sulfa for suspected diverticulitis infection with a fever and SED of 140. I felt wonderful on Sulfa. Now the diverticulitis is creeping back.

I take a different slant on possibility of cause. I suspect an infection or a virus. Maybe we get over the virus or infection, but not unlike childhood trauma, (which I believe is also a trigger) ; the body remembers.

It often feels like my body is waging war on an enemy I can't see, or was already defeated. I also have complex post traumatic stress disorder, so I bear personal witness that the body does remember.

I do know I would feel better if I could have some estrogen. We just put our old dog on estrogen and it worked wonders for her. Sigh! Growing old sucks.

PMRpro
PMRproModerator
in reply to phebamom

We had a colleague whose wife developed PMR. I don't know how bad the pred was for her but she stopped it. Her husband persuaded the local rheumies (Budapest) to try long term antibiotics - and they worked for her, a better result than with pred. A few people have noted they feel much better when on antibiotics for something else - can't say I'd noticcd it myself but it does suggest at least one version of PMR is due to a subclinical bacterial infection.

Whitner
Whitner
in reply to PMRpro

Long term antibiotics PMRpro.? Wonder if it was Lymes disease?

PMRpro
PMRproModerator
in reply to Whitner

I doubt it - he'd have said if that had been considered. But who knows.

Whitner
Whitner
in reply to phebamom

Yes phebamom it does!

Whitner
Whitner
in reply to Whitner

Although the alternative is worse🥴

I’ve never been on HRT either! Never had any probs with menopause—- over in 6 months. No hot flashes —- but now—- OMG Huge dripping Pred sweats!!! 🤪🤪

HI, I have always blamed my PMR on dental surgery that I had several months before symptoms appeared. I had tissue grafts that took a long time to heal. Instead of continuing me on antibiotics, I was switched too soon to Prednisone. I have since read that I should have stayed on long-term antibiotics instead, and also read that YES sometimes dental surgery can bring on an autoimmune disease. The advice (after the fact) was that after any dental surgery one should take appropriate supplements and avoid any stress and any serious, strenuous activity (perhaps "Spring" cleaning or weight training or strenuous work-outs). I was not diagnosed with PMR until two years after the dental surgery so suffered from related pains and went from doctor to doctor until Rheumy that diagnosed me. Now 4 years later, after several tapers, I am on 3 mg-- going down .5 every 2 weeks. I am mostly pain free and I am starting to feel somehow different. I can't explain it but even my husband notices this. I have more energy and incentive and my husband said I am not so "cranky." Perhaps the PMR is waning the course.

Whitner
Whitner
in reply to Robinre

So very interesting Robinre listening to everyone’s ideas about cause. This is such a wonderful site! Nice not to be cranky!

No idea about cause (GCA Nov 2016, age 69).

Also developed diabetes within days of starting prednisolone. Also had bursitis, for some years, but that has improved a great deal in recent months. On its own - no steroid injections.

Was not on HRT at the time of GCA diagnosis. Had been on it for ~15 years, but had stopped for a break, at insistence of GP, more than a year before. [As I'd never been on oral contraception, did not think I was overdoing the HRT.]

After a while on pred, I resumed a reduced dose of HRT (one third tab daily), as a contribution towards bone protection. Also take vit D3 and K2, but not Adcal as that upset my stomach. I eat low carb, w a focus on calcium-rich foods. Bones OK so far, fingers crossed. Started on 40mg pred; now down to 3.5mg.

All the best.

Whitner
Whitner
in reply to BonnyQuine

Thanks for your input BonnyQuine. Congrats on getting down to 3.5 mg prednisolone!

Never on the pill and never on HRT. But it did start as bursitis on right hip and did follow a period of extreme stress caring for my father. I probably get a warped perspective on this website because of the way it must filter what it thinks you would like to see, but it seems like there are a lot of active 50 somethings who develop PMR. I guess 50 somethings would overlap with menopause and HRT use! Who knows.

was on Bio identical hormone treatment for 3 months before PMR/ GCA. I also had a hysterectomy one year before. Makes me wonder....and has since this all started. My personal opinion only is taking birth control pills for several years, having a nova sure procedure, etc, many female issues since age 42 has had to have an impact on many things.

Whitner
Whitner
in reply to dougy8419

dougy8419 I too had the nova sure procedure but that was over 10 years ago for me. I've been on estradiol/norethindrone for probably 5 years for my osteoperosis. Certainly would be nice if we could find some common event that may have started our PMR!

agreed. nova sure for me was performed 12 years ago. I am very convinced this led me into a downward spiral.

I was 52 when diagnosed with PMR (November 2019) and I was not on HRT. I had knee surgery in March 2019, (ACL reconstruction) following a skiing accident, but for over a year prior to my diagnosis I would wake up feeling hot for a short spell around 5am and I started feeling very tired, sometimes I would need to lie down after a meal (especially if I ate white flour). Needless to say I assumed these were all symptoms of a menopause, but they didn't seem troublesome enough to ask for HRT. But, perhaps this was PMR all along.

I started feeling unwell at the time when I was examining my life and thinking that some changes are required and the illness was an impetus for positive change. I feel more present in my life, I am more productive and above all I prioritise looking after my body and keeping calm no matter what. I think of PMR as my body's cry for help and I am doing my best to respond.

Funny, I too feel more aware of what’s going on around me if that’s the right word, more deliberate about things and happier, I don’t sweat the small stuff. Not sure if that’s the PMR or prednisone, I think most likely it’s the prednisone. Doesn’t look like we will be able to find out what starts this stuff!

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