Does HRT make a difference?: Hello, Its been a very... - PMRGCAuk

PMRGCAuk

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Does HRT make a difference?

rosajur
rosajur

Hello, Its been a very long time since being here but after 7 years of pmr & on 2mg pred per day, with flares, a friend is utterly insistent that hormone replacement therapy will knock it on the head. I was also wondering if anyone has tried cannabis oil. As women, she thinks we need to go down this road. Thanks in advance.

38 Replies

Hi rosajur

I'm on HRT which includes oestrogen, progesterone and testosterone. I developed PMR WHILST taking HRT so I doubt it will knock it on the head.

Having said that, I feel the swings and roundabouts of being peri menopausal do impact on the PMR - I feel more pain when due a period. Not a flare as such but more achy and the fatigue can be significant.

I would have a miserable quality of life without HRT and of course pred. If you are having menopausal symptoms it is worth considering HRT for sure - it offers some protection for bones, heart and brain.

rosajur
rosajur in reply to Coffeebeans

I'm actually post menopausal. Interesting that you are still affected while in peri menopause which makes me wonder if hrt would make a difference.

Coffeebeans
Coffeebeans in reply to rosajur

I'm my experience talking to other post menopausal women on another forum, HRT will help with all sorts of general aches and pains that are caused by low estrogen. I doubt they will help PMR.

It's also not recommended to start HRT past a certain age although I.csnt remember that age without looking!

rosajur
rosajur in reply to Coffeebeans

My friend is citing that the work of Louise Newson has the answers that ALL post menopausal sufferers of various ailments need to hear. I am very sceptical but to be fair, need to air this. Reckons anyone on hrt has long recovered from pmr & no longer need this forum.

Coffeebeans
Coffeebeans in reply to rosajur

There is no doubt that Louise Newson is doing great work. HRT works on stuff it can work on. Problems caused by low oestrogen. PMR is not treated with oestrogen so whilst well meaning, not helpful.

I do agree with your friend though, too many women have been refused HRT that would have benefited due to an outdated study that wrongly showed elevated risks with HRT. Stories of women leaving jobs, suffering anxiety, incontinent etc etc.

Hi rosajur. I'm sure your friend is very well-meaning and caring but I'm not at all convinced that HRT would be of use in treating PMR. As far as I know that drug isn't suitable anyway for those aged 60 and above. I can't comment on cannabis oil.

rosajur
rosajur in reply to 123-go

My friend is convinced all PMR sufferers on HRT have recovered & mo longer need this forum. See above reply

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to rosajur

I think you leave your friend to her beliefs, and stick with the Pred - and us!

rosajur
rosajur in reply to DorsetLady

Thanks. Hah ha. I agree with you but needed to ask to cover bases.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to rosajur

Yes completely understand, must keep an open mind - but if it really did help, I’m sure it would have been highlighted on here before.

Shame you seem to be stuck at 2mg, but TBH it’s such a low dose that is obviously doing you more good than harm, perhaps you should accept that’s what you need....

...sorry probably not what you want to hear.

rosajur
rosajur in reply to DorsetLady

I often feel I need higher doses of pred but the side effects are just as bad. Cruising on 2 mg seems to be ok most days so am leaving it there.

123-go
123-go in reply to rosajur

Your GP/rheumatologist needs to be consulted on the question of HRT.

I'd urge you to stay with this forum as there are many long-timers here with vast experience. With respect, I'd like to see evidence that PMR sufferers have recovered after taking HRT. I'm sure if that were the case we'd have heard about it here. HRT replaces the deficiency in oestrogen in menopausal women and I've never heard that it manages inflammation in musculoskeletal diseases. If it did, there would be no people still suffering.

rosajur
rosajur in reply to 123-go

Yes you are right we would've heard about it by now.

Why not try it? Have a chat with the doc and see. Probably not a cure for PMR, otherwise this forum wouldn’t exist, but may help you work out what is menopausal stuff and what isn’t.

rosajur
rosajur in reply to SnazzyD

I hate going to doctors anyway as I feel they look at me sideways regarding polymyalgia. I haven't physically been in a surgery since 1.5 years, just get pred on repeat.

PMRpro
PMRproAmbassador

Isn't it amazing how people KNOW what will work? None of them have ever had PMR either ...

It MIGHT work IF your PMR symptoms are due to hormonal imbalances at the menopause - there is one form where that applies. It is not very common and there are plenty of people on HRT who developed PMR and even GCA. I'd also doubt that the symptoms are pred-responsive. If you have PMR symptoms that don't respond to pred then trying HRT might be a valid idea and I do know of a couple of younger patients where it was the case.

However - depending on one's age it might pose problems getting it prescribed.

jinasc
jinasc in reply to PMRpro

I am one of them, I have been on HRT since 32 yrs of age and now 82 and still taking 0.625mg daily.

I had GCA for 5 years.

JanetRosslyn
JanetRosslyn in reply to jinasc

I'd been on HRT for 10 years when I got PMR and was still on it three years later when I got GCA. My GP refusses point blank to give me HRT while I have GCA and I'm really suffering.

rosajur
rosajur in reply to JanetRosslyn

So sorry to hear. It's unbelievable what some go through. Just hope something improves for you.

jinasc
jinasc in reply to JanetRosslyn

Sent you a PM.

rosajur
rosajur in reply to PMRpro

Thanks

I was already on HRT when l developed PMR & continued to take it for the first three years, it was stopped for other reasons but made no difference either way.

rosajur
rosajur in reply to MrsNails

Good to know

If I had a pound for all the “ good advice” I have been given over the years, I would be a millionaire!I know this advice is coming from a caring place, but it is really hard batting it off. In the early days, I felt I ought to try everything that was suggested. I am wiser now and stick to the advice and information given here and actually the other advice has stopped now. I suppose my friends and acquaintances have seen that this isn’t going away anytime soon!

rosajur
rosajur in reply to suzy1959

Yes, I've been told of a million things I should be doing by people who know nothing.

How interesting. I cannot have HRT because of previous breast cancer but still interested in responses. Why does your friend think this?

rosajur
rosajur in reply to Songbird69

She recently started hrt & her issues melted away. She even bought her first bike & is cycling about for the first time in her life. Such is the miracle of hrt according to her.

PMRpro
PMRproAmbassador in reply to rosajur

Horses for courses - similar symptoms can be due to the menopause and that is what I was told on and off for nearly 5 years. But it was pred did the job.

It is very kind of your friend to take an interest, but didn’t they think that with all the world’s medics one of them might have suggested HRT rather than pred? Or at least suggested we all use it.

rosajur
rosajur in reply to piglette

She feels that the benefits of hrt are kept under covers, denying information to women.

The estrogen in HRT does keep the bones strong so might reduce the damage pred does and reduce the need for AA.

PMRpro
PMRproAmbassador in reply to Dots___

I'm sure it did for me - my bone density is good and has barely changed in 11 years on pred.

jinasc
jinasc in reply to PMRpro

Bones 97% at start of GCA end of GCA Bones still 97%.

Yes, as PMR Pro says, isn't it amazing how people think they know the cure. My brother claimed if I ate KETO I'd be cured of PMR. Baloney skins! By the way, I take HRT and it doesn't make any difference at all to my PMR. Wish it would have.

rosajur
rosajur in reply to artfingers

Ha ha. I've had keto, vegan, gluten free, organics, herbs, meditation, yoga & even getting nourishment from the air suggested.

PMRpro
PMRproAmbassador in reply to rosajur

Keto - or at least, low carb, IS beneficial. It may reduce the inflammation a bit but there are plenty of people who are attempting keto and who still have a need for pred for PMR. What it does help with is weight management and reducing the risk of developing steroid-induced diabetes.

rosajur
rosajur in reply to PMRpro

Yes, am leaning towards a more keto diet as I don't feel as hungry & this year I want to lose some of the weight gained from pred etc.

I’ve been on HRT since I was about 40. Am still on a reduced dose at 70. Also while on HRT I have had PMR and GCA so personally I don’t think it makes a difference. One thing though I have refused to do is come off the HRT altogether. My reasoning behind that is because I may then start having aches and pains as a result of coming off it. I feel then I won’t be able to differentiate between PMR pains and pains caused from the withdrawal of the HRT. I ‘ve therefore tried to keep everything else constant while I’ve been tapering the pred. 💐

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