Hi I am 44 and peri menopausal hot flushes, sleepless nights, brain fog on top of my lupus brain fog I am surprised I can remember my own name.
Dr does not want to give me HRT due to blood clotting but when I have tried to research lupus and HRT they don’t seem to recommend it. Has anyone had the same or on HRT than can give me some insight?
Thank you
I asked rheumatology (Addenbrookes) when I got to the menopause and they said that the advice had changed over the years and they are okay with rheumatology patients being given hrt now.
I think the hrt has improved over the years and if you take it in the form of a patch there is only a small risk of side effects. The progesterone pills are a higher risk.
Hi,I had bad peri menopausal symptoms and I am on HRT.
It eased my major symptoms but does not help with bone pain caused by menopause. To the point I fell down the stairs due to this pain on (both hips). I have been using HRT four months now. A form of sticker. Evorel. Happy with it. I do take aspirin as I had two mini strokes.
Hope this helps, xx
Hi Kell12
I have UCTD after first being misdiagnosed with lupus. How long have you had lupus? I got this late 40’s and I’m sure many of the symptoms were menopausal. I went private to discuss HRT and it’s been a game changer for me. I have progesterone (not progesteren) tablets at night they help you sleep with sandrena gel . They are the most natural form . HRT had come along way and my rheumatologist says it’s ok to take. I was on blood thinners but he took me off them ad I didn’t need them. I suggest you see a menopause clinic or go private to speed up the process as I did - I just could wait I felt so bad. Good luck and hope you have success as it really helped me.
I was told I could have the patches as less risk of thrombosis and clots. Not started yet but all drs in agreement that I can do this.
I am on HRT gel too. I seem to be fine on in so far, its been two years now also I'm on progesterone one a day which does help a bit with sleep. I still get hot flushes but not nearly so many per day. I think the flushes could be Lupus as well though. I think patches or gel are less severe to your body than tablets so maybe that's why its generally ok for us to take hrt now. It sorted out my mood swings and sadness quite well so I'm more on an even keel with that at least. I wish I'd had it for perimenopause but didn't think of going in my 40s. I was 50 before I started taking it. Weigh up the advice and then make a decision yourself. That's what it came down to for me as I'd ask 3 different consultants and my GP. The GP left it to me in the end as the consultants differed in their advice.
Hi Kell. I’ve been on HRT for almost 15 years/ before my lupus diagnosis. Started with natural remedies and patches etc. Eventually they stopped working so now I’m on estradiol 1mg. and 100 mg progesterone at night. My menopause symptoms were very intense and I’m sure it had to do with lupus. Literally could not focus to read a book. My rheumatologist says the Hydroxychloroquine helps protect from blood clots. ( I’m in US). In the end I think we all learn it’s about quality of life vs. risk. For me, now 65, I never intend to stop taking it. I should mention I started at 2mg.
and last 2 years slowly reduced to 1 mg. Best, MrsMarigold
Hi. My Dr wrote to my consultant for advice. I was given the Sandrena gel as it was considered the safest method for me. It didn't make much difference at first, so they increased the dosage & I no longer suffer from night sweats (yay!). I think it really depends on how Lupus affects you personally as to whether you can go ahead with it.
Been on utrogestan 100 and evorel 75 for 5 years now, started on the evorel combi patch but it wasn't enough to stop the night sweats. I couldn't function without it. Can you ask for a trial period and they can check your blood clotting factors before and after and see if its made a difference to you?
We all understand- but, since we learn to live with Lupus Flares - we also LEARN to live through PERI-menopause & menopause.
It’s truly a balancing act & recognizing symptoms - then, treating, resting, lowering STRESS TRIGGERS (children 🤔🥴), etc
“ESTROGEN” has long been thought to be a LUPUS TRIGGER.
kaleidoscopefightinglupus.o...
lupus.org/resources/can-hor...
marcellepick.com/lupus-horm...
Third ARTICLE/REFERENCE above indicates that a “LOW DOES exogenous hormonal replacement” could be possible.
Article: THE OBGYN recommends a “COMPLETE HORMONE panel to gauge all sex hormone levels & metabolites in your BODY”.
Then “all” HRT possibilities can be considered in relation to LUPUS CONTROL of FLARES which can “damage any organ” in your body.
They suggest that EATING ANTI-Inflammatory Diets, LOWER STRESS LEVELS, stay away from SUN, etc - these can AFFECT/ or exacerbate HORMONES which then causes LUPUS FLARES.
Hello Djlr.
Good reading and references. We learn to live with lupus flares because we have no choice. Trusting my doctors and my own research I choose a better quality of life which practically happened over night. Some women can sail through menopause. Some like myself are in such a state we go to the grocery and can’t recall how to get there. Living 2 years like that was enough.
That happens with Lupus FOG - hard to know the differences difference.
I have been through all & it’s very hard to distinguish. Like when we 1st get a VIRUS- we wonder, is this LUPUS flaring or a Real Virus (flu, cold, stomach virus, allergies, COVID, etc)
We work HARD to DISTINGUISH flares & it’s a learning process. 🥴💜🥴
But, my FOG is always WORSE when my LUPUS is flaring. I forget why I went into a room, folding towels one after another & doing it a different way each time 🤔, having to Write down appts or I might forget, ….. all this started before lupus diagnosed and has continued for 25 years.
I have learned the LUPUS affects our BRAINS.
CNS LUPUS. (Central Nervous System Lupus) and not everyone has it, but most have trouble w/LUPUS FOG during FLARES - can be one of main symptoms.
hss.edu/conditions_lupus-fo...
lupus.org/resources/lupus-a...
But when I am LUPUS FLARE “free”, my brain clicks on all cylinders. That’s when I pay bills, do major projects, and probably “overdo” because I “do” feel well 💜😊💜
I appreciate your point of view. And you are right it is difficult I think to know which is a flare or fog. Lupus has thousands of faces and tag along AI diseases and central nervous system complications (mine). So many varieties of one disease is helped with a medication that may do nothing for another individual. HRT is another tool in the toolbox that can actually help distinguish flare and fog. I’m grateful for it.
note my diagnosis is Stills Disease which for me manifests as RD. I have been using Everol HRT patches for 7 years without problems. I’m med free for Stills except pain relief and recently had 4 months on Omeprazole for an as yet undiagnosed episode of something. I also read that HRT was perhaps not best prescribed for some AI diseases. Personally the benefit of the HRT to my QOL is worth any contraindications so far and as said in this thread modern HRT had improved .
Keep well.
Early Menopause
Menopause and flares
