HRT and pred: I have both GCA and PMR and am making... - PMRGCAuk

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HRT and pred

Waves2 profile image
22 Replies

I have both GCA and PMR and am making slow and steady progress with pred reduction and am now on 7.5/7mg. I also use HRT patches which I am considering stopping. I have concerns about this disrupting my progress with the pred reduction and/or the risk of provoking a flare. I have recently moved so have a new gp who has suggested stopping hrt. Does anyone have any experience with this or advice?

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Waves2 profile image
Waves2
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22 Replies
Pugchick profile image
Pugchick

Probably depends on your reasons for stopping HRT.

I (re)started HRT a few months after developing PMR, purely because I wanted to mitigate the potential side-effects of the steroids (sugar metabolism, bone density, strength etc) and was fortunate to have the bonus that it stopped the hot flushes. So it was a double win for me, but it'll be different for everyone. The first time I tried HRT (pre-PMR) it was oral and didn't help the flushes at all, but this time it's patches.

So personally, I'd stay on the HRT, but then I've no plans to stop at all!

Why does your GP want you to stop?

Waves2 profile image
Waves2 in reply to Pugchick

No great concern. She just wanted me to think about the potential risks longer term. Just got me thinking I know little/nothing about its interaction with pred and if I were to come off it would it be easier now (before potential adrenal problems below 7ish) or best to stay with the status quo while I am still on pred which is what I have been thinking.

PMRpro profile image
PMRproAmbassador

The HRT is providing you with bone protection so I'd be less enthusiastic about stopping it while on pred. I stopped mine after one too many of the interminable cancer scares there were then - big mistake! Some months later PMR turned up to play and there are several on the forum with similar tales.

Waves2 profile image
Waves2 in reply to PMRpro

Thank you...just the sort of info I was looking for. I didn't really want to rock the boat with a medication change either but just wanted to check with the wise ones first!

Pugchick profile image
Pugchick

I don't think there is much, if any, direct interaction between HRT and Pred (in fact I had hoped I might get a miraculous steroid-sparing effect starting HRT, but didn't notice one!). So it probably won't be any different coming off HRT now or later, but for now while on Pred, HRT benefits will probably outweigh the risks.

Waves2 profile image
Waves2 in reply to Pugchick

Thanks. I had been wondering about the hormone change if I stopped coinciding with the adrenal challenge to come mainly but my instinct has been to stay put.

piglette profile image
piglette

My rheumatologist said he thought HRT was a good idea for bone protection because of steroid side effect.

JanetRosslyn profile image
JanetRosslyn

My GP stopped my HRT about 18 months ago, despite all my pleas, which has 'muddied the waters' so to speak as my rheumy worries whether my hot flushes are hormonal or due to medication or to disease flare (PMR GCA LVV) Last week she told me she would ask my GP to reinstate my HRT.. . yippee!

Butterflycake1 profile image
Butterflycake1 in reply to JanetRosslyn

Can I ask you what brand of HRT you are on and is it just oestrogen only or a combined pill? My sister is going to ask her doctor about taking it again as she went “down” cognitively after menopause. Both she I, (and even my mother years back) were on HRT and we were doing really well on it until they told us to come off it because of breast cancer risks. Unfortunately, we didn’t have a choice. I can’t remember the brand we were on when living in the UK. Thank you.

JanetRosslyn profile image
JanetRosslyn in reply to Butterflycake1

I took Kliovance. I have a telephone consultation with my GP in 3 days time with a view to restarting now Rheumy has given her written approval. Keeping my fingers crossed 🤞 It contains two types of female hormones, an oestrogen and a progestagen. Kliovance is used in postmenopausal women with at least 1 year since their last natural period.

Only45 profile image
Only45

I find this quite interesting as I had just started on HRT the patches and the oestrogen pil at night just before my symptoms started. Did your doctor say why you should stop the HRT?At the time I did wonder if these symptoms were some kind of reaction to the HRT but the GP said that it would not of caused the inflammation in my blood.

Waves2 profile image
Waves2 in reply to Only45

I think it was more a routine question as I have changed gp. I intend to stay on the patches and the replies here have been reassuring. I hope those with more medical knowledge on here may be able to answer you more helpfully.

Bridge31 profile image
Bridge31 in reply to Waves2

I have had patches for 35 years and have been taking Pred for 3.5 years. My Dexa scan was very good for my age so I do believe it was the right decision to stay with them through all the controversy.

Like Pugchick I have no intention of stopping them either.

The new ones are the size of SIM cards though and ridiculously fiddly !

JanetRosslyn profile image
JanetRosslyn in reply to Only45

My GP said I should not be on HRT as I have GCA and LVV.... My Rheumy disagrees!

Countrykitten profile image
Countrykitten

I've been on HRT for 35 years, started when I was 42. I tried to come off a few years ago when all the scares were around. Despite tapering off over a long period I felt so ill I went back. I've been taking half a dose for several years now and have no intention of ever stopping. Prior to starting on Pred I'd actually improved my T score from last Dexa scan but I haven't been tested since. Don't let GP bully you into giving up.

Waves2 profile image
Waves2 in reply to Countrykitten

Thanks..it is reassuring to get such positive feedback about HRT.

Nightingales profile image
Nightingales

Sometimes I think Drs are still caught up in the studies that came out at least 15 years ago linking HRT to heart problems and breast cancer. Studies that have since been found to have flaws. I even had one young dr tell me as I was elderly it wasn’t natural! The Royal Osteoporosis Society have info on HRT and it is an accepted for prevention of bone loss. I went back on it six months ago as I was so concerned about the side effects of the usual bone protectors. I was on it for 25 years after total hysterectomy then persuaded to come off. I am be more concerned about bone protection than interaction with pred.

Florigale profile image
Florigale

I thought my first attack of PMR was caused by stopping my HRT. A few months into the PMR episode, I went back on HRT and then began to recover from PMR.

Macas profile image
Macas

I have been taking HRT for years . Pmr for 13 years but despite the long time on steroids my bone scans have been very good . I feel sure that for me HRT has been great.

Iamfedup profile image
Iamfedup

I have continued with HRT whilst on my Polymyalga journey for the last three and a half years with no problems

Jackoh profile image
Jackoh

I have been on patches for HRT about 30 years. I had intended to start coming off HRT and then developed PMRGCA and I decided I didn’t want to change anything while I still had PMRGCA so that it wouldn’t muddy the waters. I have had frequent requests from medical and nursing staff to come off HRT but have refused. My dexa scan after 7 years of being on pred was excellent. X💐

Coffeebeans profile image
Coffeebeans

I'm on HRT including testosterone, and have been for 4 years (1 year before the PMR started)

Gp and Rheumatology happy that I'm on HRT and Pred, I'm happy because it helps the symptoms and helps protect my bones. I can't imagine what it would have been like coping with horrendous menopausal symptoms AND PMR.

If you want to stay on HRT then there's no real reason to stop just because of PMR and Pred.

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