HRT anyone?

[NewLupusdiag]

Hi all,

I was diagnosed with Lupus last June.

Luckily my symptoms are mild - and my rhumatologist agreed that i didn't need to start hydroxyholorquine if I didn't want to.

I'm definitely peri-menopausal and a lot of "symptoms" of lupus overlap with perimenopause and my rhumatologist agreed it's hard to tell which is which.

He said oestrogen can be a trigger for flares.

anyone here on HRT?

I really think my lupus was triggered when my oestrogen started to drop a couple years ago...

[Treetop33]

I'm on HRT but take a low dose, which takes the edge off it but doesn't trigger any lupus symptoms.

[NewLupusdiag in reply to Treetop33]

oh that's super to know - i'd definitely be trying the lowest dose possible. I reckon i'm nearing the end of peri-menopause for sure. my rhumatologist couldn't say what were lupus symptoms vs what were peri-menopause. they're all similar - because they're all inflammation - one caused by lupus other by the drop in oestrogen.

thankfully my syptoms are all mild and manageable - but i'm wondering if the HRT could just as you put it, take the edge off.

it's a mans world (apolgies to any men on here :-))

but thankfully menopause is more understood and there are more resources for women - but because of this - it might also lead to longer diagnosis times for women also for auto-immune. it did in my case as both myself and my doctor put a lot of my symptoms down to peri-menopause so delayed testing.

thanks for response i have hope now

[Bobbydoodle]

Oh I have Lupus and I am on HRT (everol conti patches). My doctors never said it could trigger flares so I didn’t know that.

I am on hydroxychloroquine, warfarin (as I have APS too), Vitamin D, B12 injections and HRT. Before age 46 I had never been on any medication.

I agree that the symptoms are similar and I don’t know what is causing what.

Also my diagnosis came at 46 when I was perimenopausal so again I agree it’s a coincidence that it all kicked off health wise at that time in my life.

[madgerac]

Good morning!

I’ve been on hydroxychloroquine for a long time 200mg and started taking HRT in 2019.

It’s been a game changer for me, as my menopause symptoms were awful. I had to see a private doctor though as my GP wasn’t happy to put me on HRT.

I’ve had no issues since being on it regarding my lupus, doesn’t seem to have caused any flares.

Good luck and keep us posted 🤞

[Hogoli]

hey there sorry to hear you’re having to manage lupus and menopause- they’re both challenging in their own right for sure!

I have been on hydroxychloroquine for 20 years since being diagnosed with lupus in 2004. As soon as I realised I was starting to experience symptoms of menopause particularly night sweats and disturbed sleep I saw GP to start HRT. Having had patterns of previous poor sleep with my kids when they were babies which led to flare ups causing organ damage, I was very worried the poor sleep from menopause would lead to another lupus flare!

There are crossovers for sure between the two, especially re brain fog and fatigue, but I have been on HRT since 2018- have had to change brands etc re shortages from brexit and Covid, but my menopause symptoms and lupus symptoms have remained pretty stable during this time with no major flare ups.

I wish you well and hope you stay stable too

[JenniferW]

When I checked about three years ago my rheumatology department at Addenbrookes said the advice had changed and that it is okay to take HRT now. It sounds like there isn't a definite consensus among rheumatologists.

For what it's worth I have been taking HRT and haven't experienced more flare ups, but everybody is different with what triggers them.

Incidentally the vaginal pessaries are generally considered okay for people who can't take whole system HRT because they are a topical application so you might be able to take them, they hugely reduced my incidence of cystitis.

[dg70]

I have lupus and have hrt gel the rheumy said tablets are a no. I rub the gel on my wrists every day which is so easy and you can adjust how much gel you use. I use estrogen pessaries too. Without hrt my hot flushes and emotions were awful. Every so often I try a week without it but at the moment my symptoms all start coming back. I hope one day I won't need hrt but it's not yet. I tried patches but i think they were too strong and i felt a bit rough. The hrt patch left me with square rashes all the time. Getting the glue off your skin is a real pain every week. Its a conversation you need to have with your rheumy definitely.

[NewLupusdiag]

thanks so much to everyone. I often wonder what people did before the internet - so many people suffered in silence with so many things. it's wonderful to be able to share our experiences with others that understand and are in the same position.

I will keep you all updated

but great to no HRT has been working....

[tiggergirl]

Hi,, I have just been put on HRT but my GP has said I can’t have it orally so I am having to have pessaries not very pleasant tbh they kind of work but not that well. They have said that they will look at other options for me if I find they not working well but not said what the other options are yet just that I can’t have them orally. I have had lupus for 33 years since I was 16 years old I have been on hydroxychloroquine for all that time as well. It is hard having lupus when it comes down to other things because the lupus or the medication gets in the way some how!

[NewLupusdiag in reply to tiggergirl]

yes I think the recommendation for most people with anything at all going on medically is not to take oral oestrogen

So pessaries gel and patch

I think I will request the gel if possibly as it seems easiest one to control

[Sher78]

Sorry to hear you're having a bit of a rough time. I was diagnosed with lupus (as well as a few other of it buddies) when I was 16. I am now 45 and have been having menopausal symptoms for a few years. I have just (a month ago) had a complete hysterectomy (due to other issues) and am waiting to start HRT (HOPEFULLY should be sorted by the end of the month as the GP dealing with the HRT is being a total pain in the arse about it due to my medical history). I have been specifically told by Haemo (I have APS as well) & Rheumy, that those of us with lupus/APS should only use transdermal HRT. I have opted to try the spray HRT, failing that, the gel (we'll see how I get on with it). Personally for me, oestrogen doesn't seem to play a massive part in my lupus (my lupus was very quiet during and after both pregnancies and has also been quiet for a few years now) so fingers crossed all will go well in regards to HRT. Obviously I will be starting on the lowest dose & we'll go from there and I will update how things go. It is a bugger how symptoms like joint pain etc can be either one of the two and I agree, it's very difficult to tell what is causing what. Wishing you lots of luck.