I hope everyone is staying as safe and well as they are able.
I am 52 and I am peri menopausal which is making me feel pretty rough but it can be hard to distinguish between what is Lupus and what is the menopause (headaches, exhaustion, night sweats, hot flushes, terrible anxiety) and in reality it is probably a bit of both. It is hard to deal with an autoimmune disease without the menopause coming to join the party!!
I wish I had been more sympathetic/interested when other women were talking about their challenging menopause symptoms, I really had no idea how debilitating it could be.
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Spandau
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I sympathise as I'm the same age.ive always had sympathy for others as my mum had a hard time back in the 80s.good job I'm in the house on my own as I can often be found sat in my bra during a sweat and I can't stand the radiators on.never thought I'd see the day I'd be wearing a t shirt in winter 🤨 .I understand hormone treatment can be difficult with lupus and isn't always recommended 🙄 what joy but just like every day us lupies have the strength to get through it all xxx
My Mum unfortunately died of MS before menopause so I have not really been very close to someone going through it. I haven’t been unsympathetic to anyone but just didn’t understand the impact on your life it can have.
I have spoken to my consultant about HRT and he is supportive at a low dose - I have APS so stroke is a risk but I am on blood thinners so hopefully that risk is minimised. I am just seeing if I can get on without it for the time being.
As you say us Lupies have a great deal of strength getting through life so this is just another thing to overcome.
My understanding is that if HRT is taken as patches or gel and not tablets, the risk of stroke and also blood clots is not increased. Worth checking this out.
My mum finally seemed to have some idea what I felt like with lupus to some degree when she was going through menopause. She had a long peripause and was really struggling for a long time. I kept trying to convince her to take phytosoya (phytoestrogens from soya plants). Well since starting that she is as good as gold unless she forgets a day and then well I can easily tell when she has a major mood swing for seemingly no reason.
Now she's back doing everything as if she was 20, and has stopped saying she's dying soon. My mum is slightly over dramatic but she's never had an issue, even childbirth for her she said was straight forward haha.
So if HRT is too much or they wont give you it pharmacies and places like Holland and Barrett are good sources of natural plant oestrogen, phytoestrogen.
Again ain't a doc on this forum, just saying my mum is as bright as daisies. For yourself at least it may settle down things and you can understand what is lupus and what isn't.
Thank you for replying Lottie and that is something I will definitely look into. It is great to hear it has given your Mum new energy!
As I said to Spanielmadlady, HRT is an option at low dose but as I have APS there is a stroke risk but I am on blood thinners so that should help. I just want to see if I can get by without it for a while so any alternative is worth looking at.
I'm in the same position as you - lupus, menopause and APS. I do very low dose HRT and if you can, get vaginal estriol, because you don't want to start getting UTIs or have no sex life at all (trust me on this). Yes, it is absolutely shit.
Apparently not a risk if it is transdermal: patches or gel, cream. I have antiphospholipd antibodies and was worried about it but my amazing GP at the time looked into it (she even did some sort of mini course) and I have tried patches and the gel/pills in the vagina combo without any side effects apart from hideous bloating and massive boobs and what felt like pmt. That was why I stopped taking it.
Hello there, I would encourage you to speak directly with a menopause specialist. HRT has developed considerably. I don't have a lupus diagnosis, I have aps and undifferentiated connective tissue disease and just for fun was peri menopausal at 35, after 2 years of coping and being fobbed off with the "too young" line I eventually got a diagnosis of early menopause and was given fluoxetine for night sweats and mood disturbance. I got to speak with a gynaecologist whos interest was menopause and was given HRT.About 2 years after that I got a diagnosis of uctd and worried that I couldn't stay on HRT but I have. The rheumatologist and gynaecologist communicated and agreed the best way to move forward. I have since changed HRT to a topical gel and a separate tablet of progesterone at night. I take vaginal oestrogen and testosterone to help manage symptoms and live my life as well as I can.
Everyone's symptoms and experience of autoimmune diseases will be different. But please don't assume. Get a referral to a gynaecologist specialising in menopause and have a chat. There is no age that you need to stop HRT, there is loads of new options even if it's some vaginal oestrogen to promote your vaginal health. If your on Instagram follow the menopause doctorinstagram.com/menopause_doc...
My mother is now 72 and still on her HRT, my sister is just starting her menopause journey at 50 and we will all stay on it for as long as we want.
I didn't have much luck with alternative therapy from age 35 until diagnosis. I found soy products made me ache all over and fatigued. Sage didn't help and made me sick. But I can understand people do benefit, remember alternative therapies can have profound effects on autoimmune conditions too.
Best of luck, don't suffer with the symptoms, if your rheumatologist isn't informed then help them get there. I was lucky and got a new young female rheumatologist who knew the gynaecological team. Good luck 😊
I can totally empathise with you I have Type 1 diabetes, Lupus and I am going through menopause 😱some days I don’t even want to get up, it’s so difficult to cope with all the symptoms, but somehow we do. If you can go for a walk I find it really helps. Maybe think about HRT patches I am using them and they really help with the flushes and anxiety. Good luck sending best wishes
I agree and for some it pushes syptoms into overdrive. I didn't really spend any time thinking about menopause but when it starts (just over 40 for me) it messes with your body and mind. Just looking into hrt but can't make up my mind pros and cons and balancing it with autoimmune is baffling. 🤔
I also sympathise. I'm 50 and I've been having migraines, brain fog, insomnia, night sweats, and anxiety which has brought on IBS type symptoms. My doctor prescribed amitriptyline which has helped a little. I now sleep well and the migraines have downscaled to dull headaches. The downside is that I feel they dull my brain even more. Many of my friends who don't have lupus are going through a similar thing but it's definitely challenging to have one on top of the other.
I just decided to check in with health unlocked and this was the first post. How timely! I had bloods taken 2 days ago and am now going on Monday to see my GP regarding the horrendous menopause symptoms I have been going through the last 4 + months putting it inlayman’s terms - it’s doing my head in
As people have already said it affects people differently. I knew straight away this wasn’t my normal lupus symptoms, because they were so intense & different. But my reluctance to go to doctor was the question, how would HRT react with lupus medicine and other medications. ? Did a bit of research, still not 100% convinced. But my sometimes 20 times a day hot flushes and multiple night sweats have left me with little choice. I will find out on Monday what doctor thinks.
Sorry for what you have been going through,and all my other fellow menopausal luppies. 🙂
Hi SpandauI'm 58 and have lupus and cfs. I didn't have a lot of hot flushes etc, but mental and physical fatigue are all heightened with so many different things going on my body.
My consultant advised me not go on HRT, but he put me on hormone pessaries (vagifem) which really helped.
Thank you everyone for all of your replies. I am sorry to see that so many of us are struggling with menopause symptoms on top of all our other health issues but great to see there are medications/alternative therapies that can help.
I will do a bit more research, try and speak to a menopause specialist and see where I go from there.
I’m 50 and I have Lupus and APS. It’s hard as some of the symptoms of perimenopause and menopause are similar to lupus aren’t they.
I’m on warfarin and hydroxychloroquine but after much talking to my specialise he agreed I could have HRT via patches so that it by passes the liver. I’ve been on them for over a year now I think and although they are not a miracle they have definitely improved some symptoms so I won’t be stopping them.
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