Hrt and lupus : has anyone here had hrt? What were... - LUPUS UK

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Hrt and lupus

Fluffypip profile image
32 Replies

has anyone here had hrt? What were you advised about it?

32 Replies
22yearsnow profile image
22yearsnow

Hi, my GP wrote to my consultant. I had to have a load of bloods taken & based on the results I was permitted to try HRT. I wasn't allowed to take it in tablet form, but was given a 3 month trial of the gel (bloody difficult to get hold of though). Can't say that I'm a changed woman after 3 months, but there has been a reduction of really bad night sweats & bad hot flushes. I had some more bloods taken recently & they seemed fine. I guess it depends on your blood test results as to whether you can have it (having a great GP helps). Good luck x

Fluffypip profile image
Fluffypip in reply to 22yearsnow

thanks!

pattypatchwork profile image
pattypatchwork

hi, i was already on hrt before i was diagnosed with lupus/ sogjens and have not noticed any issues with being on the gel and hydroxychloroquine

Fluffypip profile image
Fluffypip

do you think the hrt might have caused the lupus?

cakerbaker profile image
cakerbaker

Hi. I was already on HRT before my diagnosis. Rheumy allowed me to stay on a low dose patch as less risky. Have had to have bloods done for clotting problems but all ok.

I think you would need to discuss with the consultant and it seems its a case of 1 rule doesnt fit all

Violette-19 profile image
Violette-19

hi there, I’ve recently recommenced HRT. It was stopped after being on it less than a year, when I was dx with SLE and Antiphospholipid antibodies 4yrs ago. My GP told me that the criteria have changed, so I could be eligible for it, and we decided that for me, the potential benefits outweighs the risks.

She liaised with Haematologist , Rheumatologist, women’s health etc after discussing with me.

I have a patch and a pill. Three months on, the brain fog is lifting, and I’m not so stiff and achy when I get out of bed.

I might add that I have a fantastic GP, who knows me well and is very invested in helping me. Also, I’m not on any Lupus meds as I had side effects from Hydroxychloroquine and Mycophenolate.

Hope this helps. Will be interesting to follow other ladies experiences of this.

Best wishes to you Fluffypip x

Fluffypip profile image
Fluffypip in reply to Violette-19

Thats really useful thanks

dg70 profile image
dg70

I'm on hrt. Saw the GP, Rheumatologist, Neurologist and Urologist before taking. One said no , two said yes so I went back to the GP and we decided to try it. I'm on the gel as it's easy to administer and better for our system than a tablet. I'm also on estrogen pessaries as well. My hot flushes are improved but not gone. My hormone highs and lows are better controlled. It's something you need to research and ask professionals. I just wish I had done it years ago in peri menopause and not waited until full blown menopause as my fluctuating hormones seem to play a big part in joint pain and mood swings and flare ups. I think this would have been easier to deal with if I had started hrt much earlier.

Fluffypip profile image
Fluffypip in reply to dg70

Thats v interesting thanks. !

StormySea profile image
StormySea

Hi there, like many ladies who have replied here, I too am on the gel form of HRT and it hasn’t caused any issues. I started it while I was already ill but before my lupus diagnosis. As I had found it helped especially with the brain-fog and night sweats, with no obvious side effects his advice was to stay on it. I was in peri-menopause at the time of starting.

There was a shortage of the gel about 6months ago & so I was prescribed the patches for a while which caused rashes with me.

There is more gel available now so I am back on that and it’s working well.

As has already been said, I think it is quite an individual thing because Lupus manifests itself in such different ways with different people. I would say that if your Rheumatologist is ok about it, and you feel comfortable, it may be worth trying it to see if it works for you.

All the best

chrisj profile image
chrisj

Had HRT years ago on the advice of my gp. I'm 75 so its a long time ago but thought I'd add that there were no problems.

It helped with mood swings for me, my daughter said it was like living with Jekell and Hyde at the time🥴so not a happy time for them, HRT calmed things down. The doc said it would protect my bones and it would be good to leave me on it when it wasn't needed for the menopause any more but it was stopped. It caused no problems that I know of.

Fluffypip profile image
Fluffypip in reply to chrisj

Thanks for telling me...

chrisj profile image
chrisj in reply to Fluffypip

Probably not much use in your circumstances but I wanted you to know I had no probs with it, I was taking tablets back then xxx

Hamptons profile image
Hamptons

I was originally told no, however I recently had bloods done so I can have the patches. Not started yet but hope it will make life a little easier.

Fluffypip profile image
Fluffypip in reply to Hamptons

Thank you...are you having ajy joint pain?

Hamptons profile image
Hamptons

currently my joints are not too bad although starting to feel the cold. The fatigue was my issue, bad for ovulation and then bad for the period so losing 2-3 weeks with it. Also started having UTIs that were just clearing and then it would be a new cycle.

I found being lactose free since Covid has eased joints and reduced gastric issues. I am gluten intolerant but try to limit my intake.

Fluffypip profile image
Fluffypip in reply to Hamptons

Good to know thanks

stillsdisease profile image
stillsdisease

note my diagnosis is Stills Disease which for me manifests as RA also that apart from pain relief I have been drug and steroid free since my mid 20s and am now 60. When the time for HRT came I was prescribed patches which I’ve used without any bad side effects for about 6 years now. The benefits far outweigh any risk as far as I’m concerned, although no consideration was made for my illness as it’s been under control for more than 40 years. I have read the PIL and believe the brand I am prescribed is contraindicated for Lupus sufferers so definitely worth your research .

Melba1 profile image
Melba1

There is mixed advice from even the top rheumatologists on this.

If you have APS (or any clotting issue) which many have as secondary to lupus then it would need great caution to use HRT and mostly be not recommended (unless very unwell with menopause I think).

I have reached menopause stage too and I think it’s that usual balance we have of risks and benefits.

And it also depends on whether your flares were/ are influenced by hormones. I’m fairly sure mine were related to hormones as often flared at period time and my lupus started with pregnancy (I think)

It used to be said (although maybe an old wives tale or more like an old rheumy’s tale 🤣) that a lot of people go into a more stable, less flare stage after menopause. But the many older ladies in here with severe symptoms rather contradict that…

So I was hoping that would be true and thought HRT would stop that possibly remission happening as still then filling us with hormones which in some cases fuel the lupus…

BUT then we have higher chance of weak bones which HRT protects against and some people have awful menopause symptoms of pain, brain fog, severe irritation with family members etc so I guess it’s a balance for all.

My GP was very kind but very cautious with me and wrote to haematology, rheumatology, gynaecology and endocrinology and mixed messages back. One of the top lupus specialists said that 1 in 7 patients with lupus will experience a big flare on starting HRT but it will usually stop if stop the medications. Patches/ gel more recommended as can quickly pull off if problems.

I didn’t have many bad symptoms just a lot of random bleeding but was worried about my bones as years of high steroid use so we decided (my GPs very reluctantly) to start last month with patches.

Had a flare within two weeks (but also was reducing steroids so probably that mainly!) GP panicked at the sight of me (mouth full of ulcers, joints swollen etc) and said immediately pull off patch and we can try again later when lupus more controlled.

Lots of people seem fine on it and you’ll find out fairly quickly if you try.

So if clotting issues - more likely a no, and need regular bloods and checking with haematology. If not then depends on how unbearable symptoms are? X

Treetop33 profile image
Treetop33 in reply to Melba1

Just a suggestion (see my post above) but what about the gels on a low dose? I have APS too, albeit borderline. HRT has made a difference, though I am very cautious of course.

Fluffypip profile image
Fluffypip

Thanks for replying and sorry you had to give up for now. Its really difficult one. I had mild lupus (in clinical terms at least) and came off all medication and was discharged about 12 years ago as i had gradually gone into quiet/ remission. Im now 55 and having a lot of problems with joint pain/ arthritis. Its 5 years since last period. Recent blood tests show negative for all auto immune markers including Ana. Last spoke to a rheumatologist 2 years ago who said it was common for lupus to just burn out and it was extremely unlikely to come back and i didn't need any monitoring. I never had clotting problems. My hands and feet are so painful right now im desperate to improve them and worried that years of being vit d deficient without knowing it are now causing arthritis

Treetop33 profile image
Treetop33

I went on HRT after a year of being diagnosed with lupus. Hormonal imbalances really played a role in my symptoms, particularly fatigue. I take a low dose of everything, which the docs poo poo of course, but I find it makes a difference. I'm really estrogen sensitive so just a dab every day for me. The progesterone seems essential to feel relaxed and sleep well. And I take testogel for energy, just a dab three times a week too. During the shortages, I came off it for two months and I was a mess.

I take the gels too, apart from the progesterone.

Fluffypip profile image
Fluffypip in reply to Treetop33

Thanks....how were you without them?

Treetop33 profile image
Treetop33 in reply to Fluffypip

Exhausted, joint pain, hot flashes during the day (I still get them in the evening).

awareness75 profile image
awareness75

Hi. I haven't had hrt, but was advised years ago if you have breast cancer in the family, you shouldn't take it. That said, I do have Lupus and breast cancer respectively but been put on hormone therapy of an injection and a pill, to reduce the oestrogen pre menopause, so hrt could ultimately be the same thing and have the same purpose. Healthwise, apart from the hot flushes and dry skin, especially my face, not too bad so far.

Fluffypip profile image
Fluffypip

Thanks and best of luck with your treatment x

Whitemagnum profile image
Whitemagnum

Im on Evorel Conti patches and have been for maybe 5 years now(early onset menopause is common in lupus patients; im 49). I was never advised against it and Lupus consultant was completely fine about it and there are no interactions(im on about 20 different meds!)and no sude effects. Hope that reassures you! Wishing you luck x

Whitemagnum profile image
Whitemagnum

P.s. the science has come on in leaps and bounds and there is a much reduced link+ chance of breast cancer on hrt so as long as you check regularly for lumps etc, there's no need to be concerned.

Whitemagnum profile image
Whitemagnum

Sorry Fluffypip, its me again! Just to say I obviously did have an initial consultation with a gynecologist who did all the checks etc and im also on warfarin, have epilepsy, had kidney disease, leaky heart valves, osteoporosis among other things and still it was absolutely fine to go ahead with the patches! X

Fluffypip profile image
Fluffypip in reply to Whitemagnum

Thank you!

doggit profile image
doggit

it’s tricky but I was advised to continue with bio identical HRT. My bone strength is high. I think I on balance would say advantages outweigh the disadvantage

Djlr profile image
Djlr

Most have stayed away from HRT- but there are different views & studies now that lupus patients can review w/drs.

Estrogen has always been said to be a trigger for lupus. As said, science is always changing. 💜

nutritionist-resource.org.u...

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