I've been started on hrt - estrogen gel, and progesterone tablets - and just wanted to check it's ok to take because on the progesterone leaflet it mentions sle on a list of conditions that could have increased symptoms taking it. My gp said it wasn't a problem when I saw her and she prescribed it and tbh I only just read the leaflet today as I have only just got to the 15th day where I need to take the progesterone.
I'm sure there must be other ladies taking hrt with sle, so thought I'd ask.
Many thanks 😊
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I believe oestrogen is the hormone that doesn't help Lupus. I've been told not to take it by two specialists...... any thing else but.
I use testosterone cream to try and keep my 51 year old - sad and sagging libido going and I haven't grown a beard yet. I believe I could take progesterone too.
Along with introductions of new immuno suppressants - I've been a lot healthier since going off HRT.
I'm not on HRT but did see this video from the Lupus Trust which might be useful? I should think it varies from person to person. Maybe best to double check with your GP and rheumatology dept if you are worried.
Thank you, the reason I've opted for hrt is because I'm struggling with 6 or 7 night sweats waking me every night besides the other symptoms. A month ago my 12 month old granddaughter came to live with me permanently and that plus the lack of sleep means I'm totally exhausted let alone freaking edith the usual lupus fatigue!!
Progesterone-only HRT was a godsend for me, a Mirena...I know some folks have trouble with it, but my symptoms - extreme pain and ‘flooding’ - were gone completely within a couple of months xxx
Me too eekt - Mirena was a godsend - I was housebound during periods before having it fitted! I also take oral HRT to help with low mood, hot flushes and general irrational mood swings - so much better for the family - and me! GP and Rheumy are fine with me on it. How are you doing? Xx
I used to have one too for endometriosis, totally agree with you about it being a godsend, it meant I didn't get periods at all in the 10 years I used them. I took the second one out a year ago because I wanted to know if I was perimenopausal, and I was.
I have been on oestrogen only patches 50mcg since March after a total hysterectomy. I’ve been fine with it other than having to change the patches on day 6 rather than day 7 because of night sweats and being irritable.
I haven’t had any problems. My disease symptoms deteriorated before the hrt so I’m quite happy to continue to protect my bones in particular which look a bit moth eaten..
I went through early menopause 14 years ago and have been taking standard HRT with lupus the whole time. The brochures say not to but my doctors have consistently said it’s not an issue and the HRT really helps me. Not sure if that would be true for everyone. Good luck!
Thank you, in my research I didn't see anything about lupus,.. I was just looking at the whole controversy over it generally. I can't stand the way I've been feeling, and i now have a one year old to look after!
I desperately need to sleep better than I have been, waking every hour or so with a night sweat and then not being able to go back to sleep again from around 4.30, I can't blame my exhaustion on the baby, she sleeps well!
I've been using the estrogen gel for 16 days and hoping to see an improvement soon with the hot flushes. My mood has improved already though which my family are pleased about!
I’ve been on HRT for 3 years now and I have lupus (SLE) and Sjogrens, along with being HypoT.
In the beginning I was on a bi-weekly estrogen patch and daily oral progesterone which helped but I was having breakthrough bleeding as well as some rapid abdominal weight gain and other side effects. For a brief period I was also taking a small amount of testosterone but my levels rose too high almost immediately (and I was angry/ irritable all the time) so we determined that I still make enough so no need to supplement.
I switched to a custom compounded bi-est/progesterone transdermal cream which I apply twice daily. While it took some time to find the correct dosing ratio to alleviate my symptoms, I’m doing extremely well on this new protocol. I did find I needed an increase in my thyroid meds because of HRT as estrogen can affect absorption.
My abdominal weight/bloat went away, no more night sweats and no other side effects.
I’ve never been cautioned by my rheumatologist re: HRT. The only concerns from my GYN are the usual HRT stuff (cancer, bone density, and overall length of time on HRT since I went into menopause on the young side - age 49)), but so far so good. I get checked yearly by GYN (pelvic U/S and standard exam). Uterine thickness and known fibroids have had zero change. So far, bone density is still in low osteopenia range and I just started supplements to help keep it that way or possibly even reverse. Won’t know if working until next DEXA scan in 2 years.
HRT doesn’t solve all my woes but I know without it, I would be miserable. I will fight to stay on it as long as I need to as I don’t believe we women need to suffer through this stage of life and give up our vitality and youth when there is HRT that can help! I’m 52 1/2 but people tell me I look like I’m in my late 30’s/early 40’s. Fit, slim, good hair.
I hope this helps. I’m in the US so what is avail to me vs what is avail to you may be quite different.
Thank you so much for your reply. I am 48 and like you try to take care of myself and have hated the way I've been feeling.
I had a guided hip steroid injection in both hips recently so less pain in bed, but couldn't enjoy it because of the terrible night sweats! I can manage the hot flashes during the day, but waking 6 or 7 times a night feeling as though my body is going to self combust with my heart racing is awful! - Then there's been my mood!!
Also, as I said before, a month ago my 1 year old granddaughter came to live with us permanently and I'm her primary care giver. A husband, 3 teenagers and a one year old means I really need to be on top form!
I forgot to mention that it will take quite a bit of time for symptoms to fade as your hormones need to build up again. It’s all about balance so you may find you need an increase in either the estrogen or the progesterone (or both). The goal is to be symptom free (menopausal-wise).
While the one estrogen (estradiol) helped me initially, I did see a more significant change with the addition of the second estrogen (estriol) when I was switched from the bi-weekly patch to the 50:50 bi-est cream.
From what I understand, I’m on a fairly high dose of the two estrogens as well as progesterone. It’s hard to quantify the dosage seeing that it is a cream and who knows how much is being absorbed, but how the process worked for me is, every 6-8 weeks I would submit a symptom chart to the compounding pharmacist who would then discuss with my GYN and the dosage would be adjusted. My compounding pharmacist is more pro-HRT than my current GYN and helped me to fight for increases when my GYN was reluctant.
For my last increase I actually played the lupus card. I basically just told my GYN, “Look... I’m still have night sweats which are interfering with my sleep and frankly, with lupus, lack of sleep only exacerbates symptoms and it’s just no way to live. I understand the risks, but you are monitoring those things closely and so far so good so until a problem arises why not prescribe the increase so that I can have my life back?”
Somehow that was enough for her to relent and she gave me the increase that I wanted (and needed). I’ve learnt over the years to speak to my doctors as people - I don’t bring gobs of research to them or self-diagnose and preach, I just say it like it is - woman to woman in this particular case. I’ve had great success using this strategy. Not 100% but maybe 85 - 90% of the time which is pretty darn good.
I guess what I’m saying is, monitor your symptoms and ask for adjustments if things aren’t yet where you want/need yourself to be. Don’t settle for the minimum. You’ve got so much on your plate (I honestly don’t know how you manage all that - wow!) so you simply need to be at your best for yourself and your family’s sake!
Hi, I was told by my rheumy and my GP to not take HRT. I found out later that it is because of APS, (antiphospholipid syndrome, also known as Hughes or sticky blood syndrome.) Lupus and APS are sometimes linked and I would ask your GP if you have been tested for this to make sure.
There is a sticky blood forum on HU if you want more information.
While I don’t have a formal APS DX, I do have positive autoantibodies for APS. In the US, that’s not enough as you need to have an “event” such as DVT or TIA in addition to positive autoantibodies (stupid rule IMHO) to get the diagnosis.
I don't usually have problems with hot flashes at night. So far anyway. But it was quite comical the other day in the supermarket.
I suffer from Raynaud's. With the current cold weather I have to dress warm including wearing ski gloves when near the supermarket fridges.
I was wearing my long fur lined boots, lots of layers and ski gloves and then when I got to the checkout I could feel a hot flash.
I didn't want to be drenched before going back out of the store in the cold. So I was at the till removing or loosening top layers, whilst still requiring the ski gloves and boots as my fingers and toes were freezing.
I really can't imagine what others in the queue were thinking. 😀
I know you feel ridiculous at times don't you?! I used to be a lot more self conscious, but I've had to resign myself to the fact that it's a fact of life now!
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