Pred and Hrt?: Hi, I've recently started taking... - PMRGCAuk

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Pred and Hrt?

Booboos171 profile image
56 Replies

Hi, I've recently started taking Prednisolone (15mg) after being diagnosed with PMR. I am almost 54 and was just starting HRT as i was experiencing menopausal symptoms. Since starting the pred i have stopped the HRT as i felt i was just putting too many things in my body all at once, plus all the side effects of pred, weight gain etc worried me. Can anyone tell me if pred can be taken alongside HRT please?

Many thanks in advance for any advice.

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Booboos171 profile image
Booboos171
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PMRpro profile image
PMRproAmbassador

Are you sure that they were menopausal problems and not part of the PMR? They can be very similar including the sweats and aches!

I know one lady who continued taking Premarin ( I think) through her entire journey with GCA and pred.

This study

ncbi.nlm.nih.gov/pubmed/794...

was carried out on patients with RA, some of whom were on low dose steroids - which suggets there is no reason for it to be thought that HRT and corticosteroid therapy are mutually exclusive.

And by the way - the so-called side effects of pred can be avoided or managed when you know how. There are loads of threads about using a low carb diet to reduce weight gain - and ask about any other things that worry you,

Booboos171 profile image
Booboos171 in reply toPMRpro

Thanks so much for replying so quickly. I am not entirely sure, just the conclusion my GP and i came to! I also experienced very low mood when I'm usually quite upbeat and positive. I was concerned about taking HRT and read lots on the subject before taking them but this was before PMR came on.

I'll read this information, thank you.

And thanks also for the diet info, i have read quite a few of the posts on here and i generally follow a low carb diet (most of the time) and naturally find i fast for a few hours as i don't like breakfast! Before PMR i was fairly fit and trained at least 3 times a week, i understand i probably need to reduce the intensity but i do hope to start exercising now the medication is working, just at a slower, lower pace so hopefully that will help too!

Thanks again for the advice, much appreciated.

Thelmarina profile image
Thelmarina in reply toBooboos171

I take a low dose localised HRT pessary twice a week to help strengthen the pelvic floor and have had no problem. Not sure that is what you and your GP have in mind though!

Booboos171 profile image
Booboos171 in reply toThelmarina

Hi Thelmarina, gosh I've never heard of that before, there are so many kinds of HRT! Thank you, I've got lots to look into and to discuss with my GP now!

Yellowbluebell profile image
Yellowbluebell

Hi booboos, I hit the menopause when i turned 53 and started on HRT. I was then diagnosed with pmr in Oct 2018 when i was 55 and started on pred. There is no clash as far as my gp is concerned and I dont have any extra symptoms due to taking both together.

Booboos171 profile image
Booboos171 in reply toYellowbluebell

Thank you so much Yellowbluebell, that's really reassuring!

Blearyeyed profile image
Blearyeyed in reply toBooboos171

In fact , taking HRT is also meant to help counteract the potential risk of osteoporosis and osteoarthritis , not just to cope with mood swings , sweats and other side effects to do with severe menopausal symptoms .

Taking the HRT you have been prescribed , to me , I am on one hormone HRT , Livial , seems to be even more important when the steroids can have a detrimental effect on your bone health too.

I would return to using it .

Don't think of taking drugs as a negative thing , or the need to take more than one pill as some sort of failure.

Taking medication is just a way of supplementing the body with what it needs to do it's job but happens to be lacking , to be able to take control of our own health , now and in the future , and reduce possible health issues .

Sometimes more pills rather than a sign of failure or cause for concern is actually a proactive and positive step.

Take care

Booboos171 profile image
Booboos171 in reply toBlearyeyed

That's true, and i am beginning to look at it that way after finding this wonderful forum! Thank you 😁

Booboos171 profile image
Booboos171 in reply toBlearyeyed

Sorry, can i just ask, are you also taking prescribed calcium supplements in addition to the HRT or perhaps it's not necessary? Thanks in advance!

Blearyeyed profile image
Blearyeyed in reply toBooboos171

Yes , I am taking Calcium and Vitamin D supplements too.

I suppose the HRT helps in terms of effects from Menopause but the Calcium boost is to do with having the extra strain on Calcium Production and Processing from taking Steroids.

Booboos171 profile image
Booboos171 in reply toBlearyeyed

Ok great, thank you.

JanetRosslyn profile image
JanetRosslyn

I had been taking HRT for five years before I got PMR and started on Pred, and I've had no problems taking the combination :-)

I started on 15mg Pred about two and a half years ago and am now reducing from 1.5mg to 1mg using the brilliant DSNS method suggested on this site, and... *whispers"... I've never had a flare.

About a year ago I tried gradually stopping the HRT but got the terrible sweats back. I cut the HRT tablets in half and hey presto I was fine again. Doctor tried to tell me half a HRT tablet was doing no good and it was all in my head. I told her that if half a tablet was doing me no good then half a tablet was doing me no harm and I'd carry on thank you very much.

To cut a long story short... after some 'discussion' I got her to agree that I can keep taking the HRT (half tablets) while I'm taking the Pred, and that I won't start reducing the HRT any further until I'm finished with the Pred.

I've lost four stone in the last six months with Slimming World; my hair has stopped falling out; and I can now walk 10 to 15 miles a day (when I've got the time). I'm not back to my pre-PMR days (athletics coach and marathon runner) but I'm getting there slowly and there's no way I'm going to rush things now. :-)

Hope you get on well with the HRT. For me it's as miraculous as the Pred. I don't LIKE taking any meds, but if I need them I need them and I'm so thankful they're available.

Yellowbluebell profile image
Yellowbluebell in reply toJanetRosslyn

I felt the same about starting HRT. As I had a hysterectomy aged 33 I was told the ovaries were still there and I would probably have a "milder" menopause and earlier!! Didnt happen that way and I couldnt wait for the HRT to kick in!!

Booboos171 profile image
Booboos171 in reply toYellowbluebell

Ah that's so young to have a hysterectomy! It's funny as before the PMR struck, the menopause and HRT were the focus of my attention then took a backseat when this came.

Thank you again, you have been so helpful x

Yellowbluebell profile image
Yellowbluebell in reply toBooboos171

DSNS means dead slow nearly stop. There are a few tapers on the forum but Dorsetlady and pmrpro's are the ones most people follow.

Booboos171 profile image
Booboos171 in reply toYellowbluebell

Ah, i see! I'll search for this in the morning and have a read. Thank you x

Blearyeyed profile image
Blearyeyed in reply toYellowbluebell

Good grief !

I got enough stick needing one and didn't get to have it done until 40 , below that they thought it was better to suffer, but they did take the ovaries too.

In a way I wish they'd just popped it out at 33 as I'd been having the issues alot longer and it made a huge difference.

But they did say at the time that I must take the HRT to prevent causing bone issues in the future.

As the Consultant said , "don't take it , you will be like a broken old crone" , of course at the moment I feel like a broken young crone but that's a different story!😋😁😂😂😂

Yellowbluebell profile image
Yellowbluebell in reply toBlearyeyed

I had cysts on tubes, one blocked tube, horrendously heavy periods and a massive fibroid growing alongside the youngest. They didnt want me to have one as I had said I wanted 4 children. That changed when my youngest was born and was a complete little s**t. I fought with them for a year and finally got it done when youngest was nearly 2!! They really dont like doing them early but if I hadnt wanted kids I would have had it done in my twenties if I could!! The choice of ovaries being left was a personal choice because I really didn't want the menopause in my early thirties with all the possible problems it could cause. Had a party to celebrate the hysterectomy!!

Blearyeyed profile image
Blearyeyed in reply toYellowbluebell

It was the Ovaries that were causing the problems for me and the massive hormone swings to do with them.

Already had caused my gall bladder removal , that was the final thing that made them agree .

I asked them exactly how many other body parts I would have to loose before they did the deed.

The main reason the don't like to do the operations early is because of risk of osteoporosis and bone health , which is why taking the HRT is so important after a hysterectomy and if you suffer badly from Menopause.

Yellowbluebell profile image
Yellowbluebell in reply toBlearyeyed

I started hrt on my 53rd birthday!! Couldnt wait as couldn't handle all the menopause symptoms. I still think I made right decision to hold onto ovaries especially with all the bone issues pred can cause.

Yellowbluebell profile image
Yellowbluebell in reply toBlearyeyed

Broken crone does seem to sum you up my dear!! Not sure about the young though!!

Blearyeyed profile image
Blearyeyed in reply toYellowbluebell

I will be the better person and not rise to that you little monkey ! 😋😂😂😂x

Yellowbluebell profile image
Yellowbluebell in reply toBlearyeyed

Spoil sport!!

Constance13 profile image
Constance13 in reply toYellowbluebell

I had a hysterectomy at 32, left with only 1 ovary. I never had hot flushes or ANY problems!! Didn't know what "menopause" was!😂

Booboos171 profile image
Booboos171 in reply toConstance13

Wow, i would say lucky you BUT i know that having a hysterectomy so young is certainly not 'lucky'!

Constance13 profile image
Constance13 in reply toBooboos171

No, as I really did want another child.

Booboos171 profile image
Booboos171 in reply toConstance13

That's so awful for you, I'm sorry x

Booboos171 profile image
Booboos171 in reply toJanetRosslyn

That's great news! I haven't seen anything on DSNS? I'll look it up (unless its an acronym and I'm being dumb, quite likely 😉) My GP suggested i stay on 15mg for 2 weeks then drop to 12.5mg and so on but reading some of these posts that seems a little ambitious so i may ask to slow the taper a bit. I was being treated for 'nerve' pain, paid for 6 private physio sessions and living on ibuprofen so at least now i know what it is.

Wow, 10 -15 miles a day! That's fantastic, i miss exercise so much, so many benefits, physically and mentally, but hopefully i can start doing more now. I've actually walked almost 5 miles today and felt quite pleased with that as for 3 months i couldn't do 1. Feels so strange when you're active and exercise is such a part of your day to day life to be unable to do anything doesn't it?

Well done you for losing 4 stone, that's amazing, you sound a very determined lady and deserve to be feeling so good. Long msy it continue!

Thanks again for the info x

PMRpro profile image
PMRproAmbassador in reply toBooboos171

healthunlocked.com/pmrgcauk...

DSNS is a reduction approach that makes it easier to identify the difference between steroid withdrawal rheumatism (due to taking less pred than the body expected) and a flare due to taking less pred than is needed to manage the inflammation. It was devised on the basis of the experiences of a group of patients and is being used in a clinical trial in the north of England. Most people find it helps a lot - many using it have managed to get to low doses and even off pred without ever having a flare.

It works for both smaller and large steps down - though no step down should really be more than 10% of the current dose and I would also always say round down rather than up when matching the change in dose to the tablet sizes available!

Booboos171 profile image
Booboos171 in reply toPMRpro

Thank you PMRpro, I've just been reading it! I am currently on 15mg and my GP plans to take it down to 12.5mg after 2 weeks (so next week) and then 10mg. Does this sound too quick to you? I am feeling much better but still feel a little achey, particularly in the morning! Thank you in advance for your advice again!

PMRpro profile image
PMRproAmbassador in reply toBooboos171

It does to me - most people really do need a month on the starting dose to get the existing inflammation cleared out. This

rcpe.ac.uk/sites/default/fi...

is a taper approach developed by a group of rheumatologists which they found reduced flare rates from 3 in 5 to 1 in 5 - and is aimed at helping GPs manage their patients better. I think my approach may then deal with the other 1 in 5 flares!

It's all very well rushing your patient off pred - but all that happens is they flare because they go too low, have to return to a higher dose and then it is not unusual to find that with each flare it is harder to get the symptoms under control. Go more slowly in the first place and you often create fewer problems.

Booboos171 profile image
Booboos171 in reply toPMRpro

Great advice! Thanks PMR pro, I'm going to follow your approach!

Booboos171 profile image
Booboos171 in reply toPMRpro

Hi PMRpro, sorry to be a pain, i have one more question for you if that's ok please?

i have had a look at the link and it advises 15mg for 6 weeks, then reduce to 12mg for 6 weeks then 10mg for a year and so on. I haven't read your advice yet and it may well have the info in there so apologies if this is the case. I just wondered if you also recommend dropping from 15 to 12.5 in one go and if you think one year on 10mg is necessary?

Thank you, your advice is appreciated as i know this takes up your time and no doubt you have posted this previously, perhaps many times!

PMRpro profile image
PMRproAmbassador in reply toBooboos171

Personally I think the 10mg for a year is not a bad idea and that is almost certainly how they achieve such a good flare rate because it keeps the dose stable at a point where the disease activity in many patients is still swinging around and it is all too easy to drop to a lower dose and then the disease activity increases again so they flare. However, many people can reduce further provided they do it really slowly and carefully and when they don't ignore signs they have gone too far.

It simply doesn't work to try to force a reduction but so many stick their heads in the sand and don't want to admit they need a slightly higher dose. It may only be 1mg that they need - 1mg too much does little harm in any way, 1mg too little will inevitably lead to a return of symptoms sooner or later.

Booboos171 profile image
Booboos171 in reply toPMRpro

Really helpful advice once again, thank you so much. I'm going to the GP on Friday and will suggest this approach.

JanetRosslyn profile image
JanetRosslyn in reply toBooboos171

Remember, it's taken me two and a half years to get to 10+ miles a day... I've done it very gradually, and I don't march along, I just stroll at whatever pace I feel like, and don't do it all in one go, it's spread throughout the day. I park half a mile from work and walk there. I have a 30 minute (mile and a half) walk at lunch time. I walk half a mile back to the car after work. Hubby and I go out for a long stroll after our evening meal. Been on holiday for the past two weeks so have been able to do longer distances, thankfully with no ill effects. Even tried swimming (which I'm not good at and which I've not done since PMR as my shoulders are where I get any niggles) and managed an occasional 20 metres in the warm spa pool. Back to work today though :-(

Booboos171 profile image
Booboos171 in reply toJanetRosslyn

Ah i see, I'm actually on leave this week hence why i can fit a bit more in! Well, I'm still impressed, i am looking forward to be able to do that kind of mileage 😏

Yellowbluebell profile image
Yellowbluebell

Just remember that although the pred makes you feel all hyped up pmr does affect your muscles and lots on the forum have made the mistake of doing too much when they first get rid of the pain.

Booboos171 profile image
Booboos171 in reply toYellowbluebell

Good point, I'll remember your advice and slow down 🙄 thank you lovely x

Yellowbluebell profile image
Yellowbluebell

No probsx

Omanain profile image
Omanain

The HRT may also protect your bones.

Booboos171 profile image
Booboos171 in reply toOmanain

Yes, that's what i thought, but now I'm wondering if there will be too much calcium if i take estrogen and calcium supplements (from the GP to protect against the pred)? I remember my aunt took a calcium pill years ago to protect against osteoporosis and when she needed a tooth extraction they couldn't get it out! She had an awful time, or am i just over worrying!

Thank you for your reply!

Pollyanna16 profile image
Pollyanna16

Hi, My GP & I decided it was best to carry on with HRT 8 years ago when I was diagnosed with PMR. Partly as I had enough to cope with & partly as bone protection. I take Tibolone (Livial) which was prescribed by a GPspecialising in menopausal symptoms. I understood it was a fairly low dose. I still get night sweats but not usually day time. It has certainly helped with bone protection as a recent bone scan showed. My GP has been anxious to get me off HRT from time to time but I’m not!

Booboos171 profile image
Booboos171 in reply toPollyanna16

Hi Pollyanna, that's good news. So, can i ask, are you still suffering from PMR and taking pred too? Just curious at how long (generally, as i know every individual is different) people find they are on meds.

Thank you for replying!

Pollyanna16 profile image
Pollyanna16 in reply toBooboos171

Well...... it’s complicated! 5 months ago my Rheumatologist thought I no longer had PMR, as I still felt very tired I asked for an Adrenal test. This has just concluded that I have adrenal suppression & so she may very well have been right. I have been prescribed 5mg Prednisolone for the moment so I am still& probably will be on pred for the foreseeable future 😢 Haven’t had the conversation about HRT yet but seeing my go this week & an endocrinologist in August ( unless I go private). I am in no hurry to come off just now.

Booboos171 profile image
Booboos171 in reply toPollyanna16

Ah i see, good luck with your appt and thank you!

Snowy12 profile image
Snowy12

Hi,

I’ve been on HRT since the age of 40. I can remember having blood tests to confirm that I was going through the menopause at the time as GP not convinced because of my age. I’m now 54 and started on 60mg pred for GCA in April down to 40mg at present. I’ve continued with my HRT and have terrible day (especially when I eat, concentrate, get anxious) and night sweats which I haven’t experienced for years on the HRT so I’ve put them down to be condition and or Pred related. GP hasn’t suggested any contradictions to me ether but I haven’t asked.

Booboos171 profile image
Booboos171 in reply toSnowy12

I hope it soon sorts itself out for you and you start feeling much better, thank you for replying!

LWNE profile image
LWNE

Hello there, just to add to the reassuring replies, ive been on HRT for 6 years, was diagnosed with PMR last Oct. I too take Tibolone which is a "better" form of HRT but more expensive so some GPs will be reluctant to give it. Im def not planning to stop the HRT as it has made such a positive difference, and my GP accepts this, and says there is no clash with the Pred. I started on 15g and am now going from 9 to 8. Ive learnt (painfully!)that I cant taper as quickly below 10mg, but its going ok now. Im very active, love hiking and swimming, and it has not stopped me doing any of this - Im hoping to get down to a low dose and wait for it to "burn itself out". Good luck to you!

Booboos171 profile image
Booboos171 in reply toLWNE

Thank you, that's positive! I had trouble getting the prescription for the HRT they suggested initially so never really got settled on one. Great to hear you're managing to stay so active. That's what i aim for!

Suedeshayes profile image
Suedeshayes

Hi. I take HRT and Pred with no apparent problems. Perhaps you should chat to your doctor and see what they advise. Mine was fine. Sue.

Booboos171 profile image
Booboos171 in reply toSuedeshayes

Thanks Sue, i feel much happier about it after reading all of the replies! Everyone has been so helpful, Thank you!

Reader7 profile image
Reader7

I've continued with low-dose HRT while on prednisone with no problems. Bone density is excellent at 72 years old.

Booboos171 profile image
Booboos171 in reply toReader7

That's good to hear, thank you!

Jackoh profile image
Jackoh

I’ve also continued with low dose HRT and Pred with no apparent problems.

Booboos171 profile image
Booboos171 in reply toJackoh

That's great, thank you, I've had nothing but positive responses so it's all feeling much more optimistic!

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