HRT Estrogen and Lupus

[VeeWat]

Does anyone have lupus and is also taking estrogen? How are you doing with it? I’d like to try vaginal estrogen but just read this article.

healio.com/news/rheumatolog...

[MADDIE73]

Hi I was on HRT patches and was taken off them as they think it was aggravating my other symptoms. I do have the coil in so would think I am getting my dose from that. First time I have heard of the vagal one but maybe worth a try it will be the only way to find out. 🤔 😉

[Lily25]

Hi, I was advised by my rheumatologist not go on HRT. But he and the gynecologist said it was save for me to have the vaginal estrogen. I'm 60yrs and have been on it for 10 years without any problems. But get advise from your rheumatologist and gynaecologist.Hope this reassures you.

[kalas2008]

Hi, I have been using HRT patches since 1986, had a hysterectomy in 1982, had long discussions with all my doctors and decided it was better to stay on them.As far as we can tell it has no adverse effects, and I get the benefits of some protections . Everyone is different but it works for me. I just turned 75.

[Star13 in reply to kalas2008]

Snap! Had my ovaries taken in 86 and full hysterectomy in 92 so been on HRT patches since 86 and now 73! All my Doctors agreed it was ok and it even helps with bones.

[dg70]

I have hrt gel and was advised not to take an oral form of hrt. The gel is so easy just squirt every day and rub it in to my arm. I have vaginal oestrogen pessaries as I have sjogrens too which the pessary helps with the dryness and tearing of the skin inside I am told by my rheumy. You must must must take progesterone too as your lining of your womb can thicken too much with oestrogen increasing your risk of cancer. That is if progesterone is advised for you. It also aids sleep so I take it at night, one a night every night. Even though I do all this I still have a slight thickening of my womb (after only 3 years of taking hrt and progesterone) and am awaiting a biopsy as they are very aware of the danger of thickening womb lining. I decided to take hrt for hot flushes and to protect my joints but now I don't know going forward what to do? Just look out for any unsual bleeding especially after menopause and see a gp quick if it happens. With Lupus we never know how we will react to things and you don't really get monitored with hrt so its up to you to decide and look out for any signs that shouldn't be happening.

[MrsMouseSJ]

Everyone's experience is individual but I absolutely love my oestrogen patches: they help so much. I also use vaginal oestrogen, which noticeably helps with dryness, and very little is systemically absorbed.There are risks and benefits to every drug, as you are probably very well aware. And it is possible to unearth studies for and against all manner of interventions. In terms of the research you highlight the title is key: 'may increase risk'. There is nothing conclusive at present, it seems.

So I guess it would be a case of you trying oestrogen, and seeing how you get on. If it's of any help to know, didn't get on with oral oestrogen at all and now use estraderm patches ( I don't know if these are available or under what name they are marketed in the States).

[Cornflowers]

I have SLE and was put on estrogen gel in my late 60s. I haven't had any problems. Hope this helps.

[richblessings]

I went on vaginal oestrogen as l have sjorgrens and dryness but l lost a lot of my hair with it 50% in fact which was very distressing. I should have gone on progesterone with it to balance things out. The oestrogen vaginal cream does work though but wish I'd tried hrt instead first

[Spacecadet73]

I just started the gel form. Have blood clot issues but my gynecologist and rheumatologist both say it’s safe as long as I’m taking blood thinner.

It’s been a few days. I slept through the night. I was up at 4:30 but I definitely felt the difference with way less hot flashes. I’ve not slept through the night in over a year.

I had the gel in my cupboard since august because I was scared to use it. So happy I have.

Best of luck

[VeeWat in reply to Spacecadet73]

Does the gel form contain both progesterone and estrogen? Can you tell me the brand/ dosage in it?

What tests do they do for your APS, I’m curious.

[Spacecadet73 in reply to VeeWat]

Hi

Yes I have APS. Was diagnosed in 1995 when I was 22 I had a DVT that I thought was a leg cramp. I was told I had Lupus when I was 31.

Im taking Estrogel. Im in Sweden and it's from a company in Belgium called Besins. I think it's just estrogen.

1 dose/pump of 0,75mg once a day.

[VeeWat in reply to Spacecadet73]

Do you know which blood tests they did to diagnose APS?

[Spacecadet73 in reply to VeeWat]

It was so long ago I have no idea. I was diagnosed in the hospital when I got the DVT.

[VeeWat in reply to Spacecadet73]

Ok thanks!

[Chris21]

Hi, I was given oestrogen cream by urologist because i was extremely dry in the vagina I have lupus sle & sjogrens. I found that after a few weeks, i was getting pain and tenderness in my boobs. GP told me to stop taking it and suggest a cream without oestrogen.

I tried sylk, yes and femine. best one for me is femine. Ive not heard of progesterone, this was never offered to me, so dont know if thats why it didnt work. anyhow using the non oestrogen cream works for me and havent had any issues so far (3yrs now)

I was also getting lots of UTIs, since using gel/cream they are only once in a blue moon.

give it a try and see if it works for you, otherwise there are other options, if still unsure discuss it with your GP

[cakerbaker]

I take hrt patches with no issues. There is apparently no increased thrombosis risk from patches either. Not sure it does anything for the flushes I think that's the lupus tbh but without them I turn into a mental wreck.

[Sushilovey]

I was already on HRT patches and progesterone prior to my diagnosis and I did have a wobble when my rheumatologist said that there is an increased risk of blood clots however the HRT consultant has advised that this is only with the tablet form of estrogen and that the only grey area is that there is some evidence (apparently not enough to be a contraindication to take HRT with Lupus) that estrogen can cause mild lupus flares (my rheumatologist advised the same. So I weighed up the menopausal issues and am still taking it and I don’t think it is causing any flares.