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.
Sorry to hear the journey you've been on with your hormones and your autoimmune condition. It's hard to know what to believe and when the US raised the risks of HRT a while ago, the use of HRT dropped off hugely, worldwide.
Take care of yourself x
Hi PrincessPearl,
Thanks so much for your really helpful response. It's such a minefield! I totally agree that there's a lot of overlap between menopause and lupus symptoms. I'm using the gel and utrogestan and this has really eased my menopause symptoms. I really don't want to go back to those pre-HRT times now that I'm trying to manage the lupus symptoms and all the medication side effects.
I went to a show that Dr Louise Newson hosted a couple of months ago and there were some pretty compelling facts that she shared about the benefits of HRT but there are obviously risks with all medication when you read the leaflets.
I haven't got much energy to exercise at the moment. I tried to resume my pre-lupus exercise routing last week and only managed 20 minutes, but hopefully I can build this up in future.
Thanks again x
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.
hi Coldplay feet
Sorry you have developed Lupus. I’m quite different to you as I have UCTD with mostly Scleroderma gut symptoms but did have some symptoms of Lupus years ago (face rash etc). I think the above answers are probably more relevant to you than mine but I thought I’d mention my ureogynacologist has recently doubled my HRT gel temporarily to heal something and I developed pain/headache through my neck and into my jaw for over a week. Having checked out teeth ears etc I reduced the hrt as I used to get awful migraines when first ill and my rheumatologist mentioned hormones possibly could cause flares. (This was 20 years ago). I rang the nurse help line and she mentioned it’s not likely to be increased oestrogen but they think it could be fluctuations in hormones that could cause problems. This could explain why women often develop these illnesses around menopause and giving birth.
As Princess Pearl says about time more research into women’s illnesses is long overdue.
Thanks Halfwayuphill. It takes some adjusting to. I hope you're managing your condition OK.
Hormones have so much to answer for. I don't think there's enough monitoring of hormones level done. I've been on HRT since February and had 2 reviews so far yet no tests have been done to actually check my hormone levels. If we knew what our levels were, we'd be able to determine how much we need to take and hopefully avoid some of the symptoms of too much/too little gel etc.
I totally agree with you and Princess Pearl that much more needs to be done to help us navigate our way through
Take care x
Hello, I take hrt and have had lupus for years. It has to be one that has progesterone in, I’m on kliofem. Hope that helps and good luck with everything!
Thank you QE93 x
I have been taking it for a few years. Gel form only as I was advised against tablet form. My neurologist was not happy with taking hrt, my urologist and rheumy were ok but not tablets. My GP said it was up to me so I went with it and it really balanced my hormone fluctuations re joint pain, headaches and low mood. My hot flushes are not a lot different but maybe a bit less. I have one kidney and had a brain aneurysm but my hormones were playing so much havoc fluctuating and causing flares that it seemed the best option for quality of life. Of course we don't take for many years, hopefully it's just to get us over the actual menopause and then come off of it and see how things are. It's such a personal decision but one tip is don't go for patches as the glue when you remove them every week is awful and set of skin rashes with me. Gel you can control the dose using more or less dependent on how its working for you. Menopause its a nightmare but hrt has smoothed things over a bit for me, hopefully you will decide if its working for you or not.
Thank you DG70. I'm taking the gel too as I was advised by the gynaecologist when I was prescribed HRT that this carries a lower risk.
I haven't managed to see a rheumatologist yet but will raise this at my first appointment in December.
You're right about the quality of life. I was getting about one hour sleep per night before HRT and was then diagnosed with depression. However I think I was more burnt out with trying to juggle everything in life on so little sleep. HRT massively improved things for me for a while until lupus took hold.
Thanks again x
I find sleep better since taking progesterone at night too but I'm guessing you take that with the hrt anyway. In terms of lack of sleep from pain I take a gabapentin at night with the progesterone and sleep like a log for most of the night until it wear off around 6am. I was waking 10 to 20 times a night with numbness and pain and hot and its so much better now and I can function much better in the day because of sleeping at night again. Have good chat with GP and Rheumy, there is more help out there if needed.
I don’t have lupus but a rheumatoid condition with many similar symptoms. I have been using HRT Everol continuous patches for nearly 10 years. In the last two years strange new symptoms promoted cancer checks, none was found thankfully and it was through this process I asked several doctors about staying on HRT and even after a vaginal probe checking the womb I have been told I can continue using it. I can’t attribute any of these new symptoms to HRT but nor can I rule it out. I am however planning to use HRT as long as I have it prescribed to me.
Thank you Stills. Keep well x
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