Lupus and the menopause: I am interested in hearing... - LUPUS UK


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Lupus and the menopause

overnighthearingloss profile image

I am interested in hearing any experiences as to whether the menopause has any effect on Lupus symptoms.

My very first lupus consultant said something to the effect that symptoms may lessen following the menopause. True?

Sorry to all the guys out there with Lupus. I don't know what this will mean to you if true.

33 Replies

Not in my case, no. Lupus hit me once the menopause started!

mstr profile image
mstr in reply to Purpletop

Me too Purplentop....I think hormones exacerbated mine and I often wish I had tried hrt instead of avoiding it as I thought it was healthier to do that. It might not have had any effect....but maybe it would have?

kimc profile image
kimc in reply to Purpletop

Hi, lupus hit me last year when I was 55, my period was on and off untill February this year. I'd been Google to find information about having lupus during menopause, and how to treat it. It seems not many people going through the same as i am now. I hear about lupus onset, but don't really know if it is a case.

Hi overnighthearing loss, I am approaching my74th birthday and I found lupus did indeed lessen at menopause, in fact the older I've become the more the more the lupus has receded, and my circulation , stiff joints etc.. also have got better - Hang on in there - it can only improve and I had no probs. with "the change" Cheers there's a lot of life to come!. Be as positive as poss.

P.S. had lupus since I was 13, diagnosed at 17, still going strong...GOOD LUCK

LCap profile image
LCap in reply to foxglove

Hi. I would love to know what you're doing to stay healthy.

Thanks for replying.

Hmmmn, evens so far. Any more takers :-)

My symptoms have only surfaced since the onset of the menopause, although the problems I was experiencing previously ie CHD and problems with my ankles and wrists could,

they say have been due to Lupus! But not having had the tests only prolonged the diagnosis. Hope this helps

Hi...I'm the same as Purpletop...lupus seemed to kick in when the first signs of menopause started...strange thing though..think as I was dealing with everything Lupus was throwing at me that I didnt have any real problems with the menopause...take care..Redfive

kimc profile image
kimc in reply to redfive

Hi Redfive, how are you with lupus right now. I'm going crazy about lupus and skin rash since last year. I finally joins this site and so much sympathy for people with lupus included me. It seems one day positive and the next day want to give up, lupus hit me last year when I was 55 and going menopause, I'm seeing my doctor tomorrow to see if my estrogen and hormones imbalance or what.

I believe the menopause kicked off my lupus as well; aches and pains everywhere and endless physio which did no good at all. Downhill all the way since - sorry! I think every single lupie is different. Hugs xxx

This problem surfaced with menopause for me..I sometimes even wonder if its just post menopause stuff...there is a type of arthritis can come with menopause etc and lack of hormones...and if you have inflammation from that, would show up on tests...but no male doctor here in BC asks about the menopause....or who, what , where , when ,why...but I'll keep going for tests just incase etc...the only test was wacky for me was the ANA 1:320 and CRP was at 11, I think..everything else was thyroid been wacky for years....

DaleDiva profile image
DaleDiva in reply to dgleds

Had MCTD for years but the menpause was the catalyst that escalated me to a Lupus diagnosis

I'm kind of the other way around, the lupus brought on an early menopause in my case ( 35yrs) although my rheumy claims it was brought on by cyclophos. but my renal team say it was the lupus, either way I've had it, no real effect on symptoms, but since a few years now my symptoms have been few :)

vonnyrad profile image
vonnyrad in reply to emmalemon

Hi emmalemon, so interested to hear your experience of early menopause.Which doctor prescribed your Cyclo,as I have never heard of lupus causing menopause, but your rheumy would , or should, know about this side- effect as they are used to prescribing it. However, if it was your renal consultant, perhaps they aren't as familiar, or perhaps are blaming the lupus as they somehow don't want to be responsible?

As regards lupus and the menopause and using HRT, here's my experience over the last 22 years!Like emmalemon, I too went through what is called 'premature ovarian failure' after being on Cyclophosphamide for a few months( initially via drip then daily tabs), one of the recognised side-effects, especially in the over 30s(I had just had my 30th birthday a couple of weeks before)but no-one told me about that at the time.All I was told was my hair might get thin- well, nearly all of my then thick, waist-length hair fell out over a period of 6 months, and I began having irregular periods and the most horrendous, extreme hot flushes within a matter of weeks.My GP( A MAN!) refused to believe I was going through the menopause, neither did my renal consultant.Despite having Lupus/Vasculitis, I did not have a rheumatologist then, and as I had had renal failure and a transplant I was under the care of the nephrology team; all of these doctors must have known about the possible effects of cyclophosphamide, but it was only after 18 months of hell( no exaggeration) that a new (FEMALE) GP tested my hormone levels to confirm that I had ovarian failure.I began HRT eventually, after seeing a specialist consultant to check my lupus/ transplant/ drugs wouldn't be affected, and my menopausal symptoms disappeared immediately.However, I still experience lupus/ vasculitis symptoms, and the HRT brrought its own problems like debilitatingly heavy periods, which only stopped after a hysterectomy 3 years ago, (I should have had it done 20 years ago,but I thought it would have been a big op and lead to a massive flare or complications due to long term steroid use, but it was so easy.)I had also heard that lupus 'quietens' after the menopause ;sadly,that didn't happen to me, but then again, mine wasn't a normal menopause.I do know that I was never better than when I was pregnant with my two children, when obviously all my hormones were sky high, and I was very bad after my second( they were born 11 months apart)and had a post-partum flare 6 weeks after the birthwhen all my hormones had obviously dropped, which was why I was treated with Cyclo.There is definitely a hormonal link, and I can well believe that for some people the drop in hormones experienced at menopause could cause the onset of lupus symptoms.

I am still taking HRT after what must be more than 20 years now, if I stop for a few days I get the hot flushes back, plus after 30 years on steroids my bones need all the help they can get!

emmalemon profile image
emmalemon in reply to vonnyrad

It was my renal team, they did supply me with all the literature about sterility, etc, but were hoping that the dose I was on was small enough that it may not happen. Sadly, unlike yourself, I had no children and now never will.

Hopes77 profile image
Hopes77 in reply to vonnyrad

I hope you can advise. I'm 47yrs old and currently going through the menopause. I am suffering from severe vaginal atrophy which is causing 're occurring utis and cystitis and vaginal burning and discomfort.

I've been advised to take vaginal Estradoil pessary.

However the contra indications are lupus, APS and protein s deficiency which I have.

I have always been advised that with having lupus and blood clotting disorders that I shouldn't take hrt.

This is so confusing.

jakenney profile image
jakenney in reply to emmalemon

I too had early menopause due to Lupus...and I took no drugs that might have brought it on (I refused treatment because of the side effects). 35 and already diagnosed with premature menopause. I also had several miscarriages before my diagnosis. Also at least peripherally blamed on Lupus. I don't have kids, and will never have them. The pain of that is often as bad as the joint and muscle aches...

I was exposed in utero for 5 months to the notorious artificial oestrogen DES in 1953. I was diagnosed with lupus as an infant & teen, but wasn't made aware of this diagnosis. Typical DES birth defects affected my internal reproductive organs. I started my periods late, had amenorrhea in my late teens & early 20s, and I now am learning that all those years I was managing endometriosis as well as a multitude of lupus symptoms. Meanwhile, I was unable to conceive. Cognitive impairment + chronic fatigue + vertigo + aches & pains etc began to be even more acute a decade before perimenopause, during which all my lupus symptoms did get even worse, with simultaneous raynauds & erythomelalgia + sicca/sjogrens symptoms becoming extremely tough, along with worsening pelvic girdle pain etcetc before a relatively early menopause... Several years later my SLE was re-diagnosed. 2 years on, I'm now 59, responding reasonably well hopefully to various topical steroids, plaquenil 400mg daily, amitryptiline 20mg nightly and seemingly benefitting from 3 x 10mg 4week oral prednisolone tapers per year.

yes, I can only complete the many statements. My menopause was induced by my lupus, and now I'm 50 struggling very much with not only lupus but sjögren and raynaud has increased. I was so hoping it would get better, but it seems the other way around. I like to know who has actually improved after the meno pause?

kimc profile image
kimc in reply to morlobach

Hi Morlobanh, I'm wearing hat like you for a year now. I'm 56 now, and seem don't know how bad lupus will effect s me from now on. I try to cope with myself but seems one day on next day off. I just hope we could do better with lupus.I have sympathy towards all lupus people since I never know about it before. Goog luck to you snd God Bless.

Hi! So interesting to read all these responses. I went through an earlyish menopause at 46 (possibly because I only have 1 ovary, but this is not confirmed?) I've had the blood test to confirm that I've been through the menopause-I'm now 48. I was diagnosed with Lupus this year so not sure if the Lupus was caused by the hormone changes. Quite a coincidence however! I was diagnosed very quickly (in April) and only started having symptoms at the end if last year. So menopause and Lupus all seemed to happen at the same time. I too, am hoping that the symptoms will ease as I get older, but who knows?! Just living in hope!

My Lupus and Hughes was diagnosed about 5 years ago, earlier this year, started getting terrible hot flushes, has bloods done and was told I was in the menopause, Rheumy and GP not keen for me to go on HRT because of the azathioprine and the risk of cardiovascular problems. GP said my only option was Gabapentin or finding something homeopathic. Only alternative therapy I have found is Ground Flaxseed, does anyone know of this and if so, is it any good. My hot flushes are horrendous and my Lupus is more out of control since the flushes, so at the moment, the menopause is making it worse. Just hope flushes don't go on for too long.

tintin49 profile image
tintin49 in reply to Sue2803

as soon as I started plaq my aches and pains worsened,terrible shoulder pain and no periods. maybe its the treatment that causes problem with fertility. I always had a period until taking plaq now none. luckily I had my three girls..lupus is no joke

Welshexile profile image
Welshexile in reply to Sue2803

Hi Sue2803

I just wanted to reply to your comment about HRt & Azathioprine - I have been on Evorel HRT patches ever since enforced hysterectomy aged 34 due to severe Endometriosis/APS and I have also been taking Azothiaprine for the last 18 months without any obviously I don't know anything about your background/symptom set etc but I just wanted you to know that taking the two together can be done!

I've always heard that the symptoms got better after the menopause. I'm 48 and my symptoms always were worse during my period. However they have stopped now but apparently i have to wait a year before the full effects are noted.

Oh and I was also on the pill permanently to stop my periods but it didn't work!!

Thanks for the replies everyone.

Oh, well. Its looking more like it may stick around for a while then.

Quite a few of you have mentioned a blood test to confirm whether you have gone through the menopause. Does this have a name?

There is a specific blood test, can't remember its name but ask GP to check your hormone levels and they will do it. i had it and it confirmed that my hot flushes weren't just my inagination. Early menopause at 40 so no periods now.

I'm the same as the others the menopause was the green light for lupus.

jakenney profile image
jakenney in reply to nanaber

Makes me wonder if we are talking about two conditions that are being grouped inaccurately? One in puberty and effecting the child bearing years, one post menopause?

KayHimm profile image
KayHimm in reply to jakenney

Yes, it seems to go one way or the other with the hormonal change. I was diagnosed with UCTD in my late twenties and felt better as I entered menopause.

My symptoms also started at menapause and hit me full blast after going off oral hormones 10 years later. I started out with joint pain in feet and knees. Then test showed a positive in DNA. I am 62. I have one knee that is messed up with arthritis and other knee hurting now. I have two bad thumbs ruined by arthritis. I stay hoarse for to sjogrens.

I got diagnosed at 50 (I'm still 50) and I thought I was going through the perimenopause when I was actually experiencing symptoms of Lupus (though I must be going through the perimenopause as well). My Lupus symptoms worsen with every cycle, though ironically with the meds I have fewer symptoms to do with my period (no pain, minimal bloating, mood swings etc), but then again I've also been on the AIP diet and lost a lot of weight, which might explain that too.

My rheumy denies there is any connection between cycles and Lupus in terms of hormones (or the lack of them) causing Lupus, but I do know there is a connection between estrogen and Lupus though it seems to work in complicated and contrary ways.

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