lupus and the menapause: hope some of you lovely... - LUPUS UK


29,639 members26,188 posts

lupus and the menapause

tintin49 profile image

hope some of you lovely people can help me. i have lupus sle and have just turned 50. i think i was perimenapausal but since starting plaquenil i have just flared and flared and have the added problem of hot flushes and sweats its been the worst year of my life.

i was speaking to my gp and he wanted to know if i wanted to strat hrt but i read somwhere that hrt can cause problems with women with lupus.

its very odd my lupus symptoms are pretty bad but magnified significantly by my other symptoms.

i would like to know anyones take on this. i just want to feel normal again thanks

19 Replies

Hello, I would not like to give 'advice', but am happy to share my experience and what I have been told with you but I think this is one to discuss with your lupus specialist, or at least to ask your gp to specialist advice.

I have just been prescribed hrt, a very low dose after a lot of discussion about it, but I am experiencing a sudden early menopause cause by cyclophoshamide treatment. My gp discussed it with my lupus consultant and he is happy for me to go on it. As I understand it, there is minimal risk that hrt can cause a flare, but as I understand it different studies will say different things, I have heard some people totally against hrt use in people with lupus.

For me, being as it is early my doctor describes it as putting in the hormones that should be there, because of my menopause being significantly early, and the risks of bone thinning etc, that is already a concern with the use of lots of steroids, and to even out my hormones, especially as my lupus seems to be very hormonally driven, and I have had an awfull year of being bad lupus wise.

I don't know if that is helpfull or not! And I know that I have been in two minds as to whether it is right for me or not. You may get entirely different views to mine!

On the up side many people say that post menopause lupus can settle itself down!

Good luck xx

tintin49 profile image
tintin49 in reply to flutterby

thanks it seems by reading all your replies that its not a good idea. my new gp is trying to help me but its a stab in the dark and what i have read about hrt and lupus was not positive. its a real bummer getting lupus and menapause its driving me insane quite literally i cant thany you all enough. i dont know what i would do without this sit.

happy new year may it be a painfree one big hugs x

flutterby profile image
flutterby in reply to tintin49

I wonder if lupus can start or be made worse at the time of menopause because its a time of hormonal upheaval? In the same way that puberty or pregnacy/childbirth can trigger lupus or make it worse? Hope you find something that helps. Xxx

I've been in menopause for 2 years and unfortunately the lupus just kicked in, so it isn't a hard and fast rule with whether it will settle down once you're past the perimenopause. About HRT, my rheumatologist advised against it, which goes to show, as Flutterby says, many different opinions among the various doctors. My calcium and vit d levels are ok, I'm due to do a bone density scan in March and see how I get on. I'm not keen on HRT in any event and once you go through the first year of hot flushes, then it isn't bad but I know that other women might have different experience with menopause that make them take HRT.

I still get hot flushes and sweats when I'm flaring, the menopause hasn't stopped those, so it is useful to differentiate whether the hot flushes are due to menopause or lupus, so that you know whether to do something about it, in the event it is a flare.

I have been going through the menopause for nearly 2 years now and at first my GP prescribed HRT , after reading the ( st paul's epistle ) leaflet inside I was unsure of taking it as it says not to take this medication if you have Lupus ( my sons too were worried about me taking them ), am I glad I didn't because a week later my GP's nurse rang me to tell me in no uncertain terms not to take the HRT tablets, that they should not have been prescribed them. I am now trying my best to cope with the hot flushes, and appalling night sweats without medication, it's hard sometimes but with all the medication I already take, one less tablet is a god send. My flares have increased since the menopause, and so has the pain. I was told that evening primrose is suppose to help, I don't know but may well give it a try. Like you the passed 12mnths for me have been awful.

Hope you are feeling better soon and that you get the advice you need. Take care. Trish

It will be 3 years in may since my last period. The hot flushes seem to have got worse. When I'm having an off day I'm not sure if it's my lupus or the menopause? I was advised not to take Hrt , 1 because of lupus and 2 because my mother had breast cancer.

hi i hav'nt been diagnosed with lupus or anything else for that matter and awaiting for my 1st app with rhuemy.don't know if i will be of any help either but i've just turned 49 in dec and i had a full hystorectomy nearly 20 yrs ago due to endrometrosis.i had to stop hrt (never agreed with me)because doctor said i was heading for stroke.i went through change i.e hot flushes night sweats after operation then again when hrt 20 years later i'm getting hot flushes and cold sweats have been for last few years nothing to do menapause(impossible).hrt made me ill.just another point of view x

its wierd but some people get lupus when they are in menapause do you think you may have lupus.. its dreadful having both i am in so much pain and heat/sweats thanks for your take on it. if you have lupus i am sure hrt is a no-no. x

I have been in the menopause for the last 10 yrs I had an hysterectomy 23yrs ago. My sweats are night and day sometimes horrendous, with palpitations. I don't always think it is the menopause, I have SLE, SS, and fibromyalgia. No one ever seems to listen. Wish I could help.

letslaugh63 profile image
letslaugh63 in reply to Gillyg

hi gillyg if you had a full hystorecetomy then it's defenitely not menopause .x

Hi letslaugh63, great name by the way. They did leave one overy so hence I knew I would go through the menopause. But it has gone on and on. I have read people get hot sweats with Lupus. Wishing you well. X

letslaugh63 profile image
letslaugh63 in reply to Gillyg

i was sweats/flush free for approx 7/8 years after coming off reason for me to be getting them now.esp cold sweats(never had them in menopause)everyone different how long menopause lasts and maybe im being thick here but wouldn't it be less time with just 1 ovary as less hormones? have mentioned them to docs years ago but ignored as per.I wish i could help you but don't only heard of lupus recently and it an awful lot to take in.hope u get answer soon x

Everything gets put down to Lupus that's the problem. It's easier for doctors to ignore other issues. It is a lot to take in specially if you have only just been diagnosed. I was diagnosed 22 yrs ago after struggling for someone to believe me for 6years. You always learn something new, no two people seem to be the same. Hope you are ok. X

letslaugh63 profile image
letslaugh63 in reply to Gillyg

i have not been diagnosed just waiting to hear from hosp for 1st app with rhuemy.but i suffer hot flushes /cold sweats and for a week now very tender/painful breast all can be related to menopause and for me that's impossible but i also had these symptoms when suffering with endro it's all very confusing to ay the least.i know exactly how you feel about getting believed it was same for me with endro until i refused to leave doctors unless they made app with that time it was too late too try medications etc it was too far gone.not going to let that happen again .22 years a long time gillyg and if i have lupus(sincerely hope not) i hope i can cope with it with same dignity,braveness and determination as you and all the other lovely survivors of this terrible disease x

i started the menopause when i was 47, i to had rea bad hotfluhes, doctor offered me HRT but when i looked online it can cause varous cancers so didnt take it,for a short while i took red clover instread.

2 years in no hotflushes, and im not taking anything for it now.

My mum took HRT for years and loved it. She said she felt youthful again. Unfortunately later in life she developed cervical cancer. Although no one can say for sure if it was caused by the hormone replacement, I wouldn't be surprised. No one else in my family to my knowledge ever had this kind of cancer. In fact she was the only female to get cancer to my knowledge.

It has definitely put me off.

sorry about spelling laptops playing up again.

Hi I have just seen this post and have found many of the replies interesting. Sorry if this is about to be a long reply but it mught be of interest to some...I was diagnosed 6m ago with lupus but had many symptoms for a number of years prior. I had total hysterectomy at age 41 for endometriosis and have had HRT now for over 10yrs...Over that time my gynae has been very supportive and we have regularly monitored my hormone levels in correlation with symptoms.and found most problems were noted with low hormone levels particularly of testosterone and were improved greatly with each gynae..who I worked with regularly in clinic could never really understand the scale of improvement I had following these or the reason my levels sometime dropped so low so quickly and he felt much of what I reported was not typical of his menopausal ladies but he observed it was such a life changing procedure for me we accepted I needed to maintain a certain level in order to keep symptoms to a minimum and the benefits definitely outweighed any potential risk for problems really started again when implants were withdrawn and my gynae new gynae has struggled since to find suitable alternatives to replace implants and maintain previous levels and my symptoms intensified and new ones appeared and I was subsequently ref to neurology who following a set of blood tests had never previously had done ref me on to rheumatology who in turn fairly quickly diagnosed lupus based on the blood tests the signs and symptoms I had when I saw him plus my long history of various symptoms dating back to my teens. He says lupus and menopause symptoms are very difficult to separate and if the hrt has helped to continue as it is the oestrogen part that gets the bad press in lupus but he doesnt think the amount used in hrt is significant enough to cause major problems in the majority of users. I now understand why sometimes the hrt on occasion didnt appear to work as well as at others and as testosterone is often found to be low in lupus as well as after hysterectimy it explains in part the great response I had from the implant. I am due to be seen at a specialist menopause clinic later this month in hopes they can help with a new alternative to boost and maintain the testosterone levels which for me has been a big part of helping maintain some sense of normality over the years..I am finally beginning to fit all the pieces of the jigsaw together and hope that once all the different medications am now taking start to work a bit of normality un life can be resumed. I dont think Hrt should be ruled out completely in lupus but as always everyone's journey with lupus is different..I have had a lot of benefit from hrt before I knew I had lupus and now I understand more about lupus I feel it can probably continue to have a complementary role in my treatment at least for the time being.x

I have had Lupus for approx 9 years and have always had it well controlled as I was fortunate to have an early diagnosis, however, since the start of the menopause the systems have worsened, I have only recently made the link and am still trying to gather advice/tips re this. So far not too much medical sympathy/help, certainly at GP level. Hoping for more from Consultant soon. My menopause symptoms see much worse than friends and tiredness is overwhelming me.

You may also like...