Hi,
I started HRT in February and have really felt the benefit of being on this. However I was then diagnosed with lupus in August.
A few people have mentioned to me that some doctors have advised that women with lupus can't take HRT. My doctor has in fact renewed my prescription recently. I wasn't aware at that time of any possible issues with HRT and lupus but lupus was on my medical records by then.
Any advice or thoughts would be appreciated.
Thanks x
Older studies advised against it as it seemed to initiate flares
pubmed.ncbi.nlm.nih.gov/175...
but more recent work is more supportive,
sciencedirect.com/science/a...
pubmed.ncbi.nlm.nih.gov/354...
Like everything - it all depends which papers the doctor saw and what theyr learned at med school. What medics learn at a particular stage of their training is sometimes very difficult to shift - even when there is evidence it may have been incorrect!
I have been on quite a journey with all of this so hope that my experience might help others. For the last 5 years I was told by my rheumatologist that it was ‘a quality of life’ issue and that unless things got really bad hrt was not an option. It was an opinion that was echoed by a speaker I’d seen at a local conference as well (East Anglia). As a consequence I doubled up on all my efforts to keep very fit, strong and healthy to help with all the lupus and menopause symptoms (there’s quite an overlap isn’t there!) . It worked for quite some time, then I became exhausted. Utterly exhausted. It came to a head when one day I was out walking my dogs and I literally couldn’t get back home and had to ask for help.
Then luckily (under husbands work scheme) I saw a private GP in London for a general health check. She was a menopause specialist and was completely gobsmacked that I had been given such advice. She said that there are only 5 contraindications for hrt and lupus is not one of them. As such I got referred to gynaecologist who is also the head of the British Menopause Society.
He explained that there is a lot of misunderstanding around all of this. His personal view was that the long term benefits (aside from the reduction of symptoms) of hrt far outweighed any concerns. Ie….The increased risk of heart disease, osteoporosis, dementia etc were higher than anything that would occur with lupus.
He often treated patients referred to him by rheumatologists at the big London hospitals.
The plan was to take things gently. Basically, to try it, assess and then consider. Everyone is different. I took the minimal amount as a spray (estrogen) and a progesterone pill to protect against uterine cancer. It has been marvellous. Within days I had my energy levels back. I can now go back to lifting weights, cycling, walking and swimming.
I have found that exercise has really helped me keep a lid on the lupus. I’ve been able to reduce my medications and all my stats have improved enormously. Without hrt I couldn’t do what I do.
Hrt has not made my lupus worse. It has enabled me to actually get much much better. I am so thankful that I had another viewpoint and tried it. I plan to stay on it as long as I can.
Yup - that fits with what I have read - because I have read far more widely even if relatively superficially than your average GP or rheumatologist. I was on HRT for about 13 years from my late 30s - it stopped fatigue and other problems in their tracks. Then there was yet another claim of how risky it was and it was one too many for even me. Within a few months the first symptoms of my autoimmune condition appeared - not diagnosed for 5 years, and even then it was by me!! My greatest regret has been giving it up and of course noone would restart it for someone in their 60s as I was when I linked it. Was it early signs of my a/i that the HRT improved? Who cares - my 40s were far better than my 50s even if you discount the aging effect.
I think I am correct in thinking that estrogen and inflammation are linked - estrogen helps control inflammation.
I also read that white women can gain auto immune diseases around menopause onset. - Which is what happened to me.
I’m wondering how much the hrt is helping me feel so so much better and how much the hydroxychloroquine is responsible for. Part of me is wondering whether to stop the hcq altogether….
It will be interesting to see what gets discovered in this new hugely overdue age of looking more carefully at women’s health.
Lupus and hrt
lupus and the menapause
Body itching with HRT
Lupus and hormones 
