HRT and Lupus

[RachelMaryS]

I’m 44 and have just been diagnosed with lupus and sjogrens in the last couple of months- there’s an awful lot to Learn. My GP thought my joint pain and anxiety was perimenopause related, and I was prescribed Evorel patches but after a month the pain was increasing rather than decreasing and autoimmune bloods resulted in my diagnosis. The horrendous joint pain and exhaustion I know know was a flare after seeing the rheumatologist . There’s so much conflicting information about whether it’s advisable for lupus patients to take HRT and I am unclear as to whether the HRT caused the flare or it was a coincidence. hydroxychloroquine has almost eliminated the joint pain but my perimenopause symptoms remain - predominantly anxiety and low mood and so I’m looking for advice from you ladies as to whether it is safe to take HRT, what is the safest form, and whether you find it works before I speak to my menopause specialist. As an aside, I’ve learned so much from this forum and am so glad to have found you all.

[Dressgirl52]

Hello , I too have lupus and Sjorgens and only diagnosed 18 months ago still finding my way ! I am on hrt and have been for 10 years due to an early menopause … aches and pains for me have only started in last 6 months ..I am convinced it’s the lupus as not had aches,/pain/ extreme fatigue before . I am waiting for rheumatologist. Appt … but agree menopsuse do muddy the waters . Hope you get sorted x

[RachelMaryS]

thanks so much for your response. I’ve only had one rheumatology appt which I went private for and got my diagnosis and meds - my first NHS appt is in a few weeks when I will ask the many questions including the HRT ones. Could I ask what HRT you are on?

[Dressgirl52 in reply to RachelMaryS]

Yes just been switched to a gel type which I use in a morning then utrogestan 200 mg at night

[Wolfie_at_the_door]

Hi there,

This is on my ever growing list of evolving questions. I'm due at work very shortly so will hope to reply with more focus soon. You're right - this forum/ group is invaluable.

[Kelbol1]

When you find out if all ok could you also update - I am wondering whether to go on HRT due to heavy bleeding - the symptoms people are saying are menopausal I have had for years due to lupus so I am confused with what is what - their is a difference between my period tiredness and flare but joints hair loss headaches etc I haven’t a clue what is what so not wanting to start patches if it’s pointless - my consultant has said it is fine to go on them even with breast cancer in the family. If u get any definitive answers would love to know what to do as well x

[Pickzie]

Hi. I have lupus & sjorgrens too. I’ve now made it through the menopause. I was unable to have any HRT as I also have anti phospholipid syndrome (APS) and the risk of clotting contraindicated its use in my case. That may not be an issue for you, although I can imagine the change in hormones could upset your lupus / joint pains. Pre-menopause, my lupus was always worse 1 week in 4! If you don’t have APS maybe HRT is an option for you and I hope others on this site with experience of HRT can advise you on what worked for them. Hope you find a solution that’s right for you.

[dg70]

I have lupus and sjogrens. I didn't get on with the hrt patches, side effects and just the sticky glue you have to get off every few days when you already have sensitive skin. I have hrt gel which i wipe on my wrists once a day, so easy. You can also manage the amount you use if two blobs are too much then try one. I was advised against hrt pills. The peri menopause and full menopause will exacerbate your symptoms for sure and I often find it hard to tell if my symptoms are menopause or lupus/sjogrens or even something else. I'm still learning a few years in. Always get advice from your Rheumatologist first then see your GP especially if you have any organ involvement, I had kidney issues. I got thumbs up from Rheumy and GP and Urologist but my neurologist said no. I made a decision to try and its balanced my highs and lows in terms of mood swings. I still get hot flushes but they are less. Unfortunately Lupus gives you fevers and Pilocarpine pills for Sjogrens gives you a hot flush after taking. It's just so hard for us girls when we have menopause and everything else to deal with and not knowing whats causing what issue. Hopefully you can make a decision once you've seen your specialists.

[atomblonde]

Hi I’m sorry I haven’t replied sooner unfortunately with everything I’ve been through her is not the way forward after given birth and saying goodbye to a 19 month baby it’s been a heavy time for me I am still very upset about my doctors putting me on get as the heamorage I believe was the reason for my having to do what I was put through anyway lupus is a real awful thing to have I feel like my life’s been put on its head I hope everyone is doing ok ❤️

[michaellasmith Administrator]

Good Morning RachelMary5,

I am glad to see that the Hydroxychloroquine medication is helping with your joint pains.

With regards to your perimenopause symptoms, as everyone's condition affects them differently and hormones can have side affects, as per the information in the below links (which you may have seen already in your research). We would recommend discussing this with a Rheumatologist to make sure HRT is a safe option for you.

lupusuk.org.uk/medical/nurs...

lupus.org/resources/womens-....

Warm regards,

Michaella

[RachelMaryS]

thank you everyone for your advice - as ever you’ve been a massive help. I’ve made an appt at a private menopause specialist GP and will then take their advice to my rheumatologist appt in early December for his opinion. Will let you know how I get on.

[Dicko2006]

Your story is almost identical to mine! I have no advice to give you sadly, but I wanted to say you are not alone. I had the same conundrum with HRT, and due to all the other horrible symptoms I was experiencing decided to discontinue it. It was interesting my first ever flare coincided with me starting HRT about 4 wks prior. I too have all the peri menopausal symptoms and would love to know what could help alongside trying to manage Lupus with Hydroxychloroquine… Good luck, I hope we both find some relief x

[Ann24]

Hi, I was told on my last Rheumatologist appointment that HRT was not an option due to blood clotting from Lupus. I am trying Wild Yam cream for hot flushes but still to early to say if that’s helping or not xx

[Sheri1]

Can't take HRT with Lupus I'm in the same situation

[pattypatchwork]

Hi, I went on hrt when I was 30 ( I am now 57) due to polycystic ovarian syndrome. I use the gel which I like as you can always up the dose or decrease as the need arises.I have had no problems with it since I started hydroxychloroquine (400mg daily) and have not been advised to stop the hrt by any specialist. In fact quite the opposite as its thought to help protect the joints.

[posthinking01]

Hi there I was on HRT from the age of 33 until I was 60 - Lupus diagnosed at aged 51 when the menopause kicked in (I still had my ovaries intact) - but.......the dreadful symptoms I experienced were in fact also linked to the thyroid and adrenal glands becoming deficient. I continued with the HRT because oestrogen is actually supplied from the adrenal glands when the menopause kicks in and the ovaries drop down their oestrogen supply - most of the problems with the menopause is actually due to the adrenal glands being 'deficient or exhausted' and the supply is diminished and causing nasty symptoms all round. Hope this helps.

[FifiTizer]

Please read the Evorel leaflet. I only noticed after 10 years and many gynecology problems and only using the patches to protect my bones. On the leaflet it says: take special care patients of systemic lupus erythematous (SLE). I've been off them for 3 months now and apart from aches and pains and the flushes I no longer have continues UTI's. Also I would like to add I've been on prednisolone for 43 years, yo-yo tapering until settling on 7.5 a day, but have been able to work and bring my family up. So don't be frightened of steroids. This site has helped more than all the rheums I've met. Good luck.

[RachelMaryS]

Hi all- just a quick update. Have had my appt with the private menopause GP which was very thorough. I was very impressed with the clarity of her advice. Her opinion was that continuous oestrogen patches with 14 days of body identical progesterone (utrogestan) to level out my hormones should be safe for me, subject my rheumatologists agreement. Rheumatology appt is early December so she is going to provide me with a written report to take with me.