hrt/menopause and lupus

[Babycakes1971]

hi everyone. I've just joined and I'm desperate for advice or experience please. My diagnosed is lupus with overlap sjogrens, probably other mctd's too. I'm on low dose prednisone, hydroxychloroquine, arcoxia, cellcept etc and I also have a wound called pyoderma gangrenosum. Over the last 6 months or so. My menopause symptoms have become so bad that I'm seriously considering hrt. I've also been told I have worsening OA and osteoporosis which is causing me pain walking. Does anyone take HRT and what is your experience? I know lupus etc needs to be well controlled but I think my worsening symptoms are caused by menopause. I'm waiting for my rheumatologist to contact me to give advice. Thank you x

[UCTD]

Hi Babycakes I have similar issues to you and am on pretty much the same medication minus the cellcept which was discontinued and I am Now on Rituximab . I have been using vaginal HRT for the past year which has helped but my gynaecologist has suggested oral HRT in addition. I will check with my Rheumy with regards to my current treatment but I want to give it a go and make life more comfortable. I will comment again when I have a response.

[Saz62]

Hi I’m an ANP with similar issues. HRT will help but oral oestrogen is inadvisable. Transdermal oestrogen ( patches/spray/gel) with opposing progesterone if required ( if you still have your uterus) HRT will also relieve joint pain and help with osteoporosis. Any GP/ANP specifically trained in women’s health can best advise and treat you regarding this if you’re UK based. Rheumatology are less informed regarding up to date treatment and availability. There are also independent menopause clinics available outside the NHS if you don’t have adequate resource resources n your area. Good luck

[dg70]

I have similar conditions to you except I'm on hydroxychloroquine only as well as blood pressure tablets. I have vaginal estrogen and take hrt. My rhuemy said oral hrt was out so I tried patches. I didn't get on with them and the glue was a pain every few days to get off. I am on the gel now which is so easy. A couple of squirts on my arm every day and rub in. My symptoms too have gone through the roof since menopause. I really cant say if hrt helps much but i think it just calms the hormones a bit and helps joint health. I think we're similar age so I feel what you're going through.

[TillyO]

Hi I would see a menopause specialist. I have UCTD and I’m on HRT in the form of sandrena gel, progesterone (not progesteren) and it’s made a massive difference to my life. Many of my symptoms have gone but I don’t have the same illness as you. I went private (UK) to get advice and it was worth every penny.

Some rheumatologists will say it can cause blood clots but the tablet form and progesteren can cause this . The gel and progesterone is the safest way to go. I water it up and thought I can’t keep feeling this bad. It was worth the tiny risk for me so if I were you get a menopause specialist and the advice of rheumatologist before making a decision.

Good luck x

[overdrive67]

Hello Babycakes, I hope you heal and get better with all the treatment s and everyone else including my self.Am 55 and post menopause, didn't use any hrt cause of the side effects. During the active phase of the menopause, i used natural herbal remedies instead of hrt especially fenugreek powder mixed with honey, i took a tablespoon full every morning in a cup of hot water which served as my tea, it's slightly bitter at first but the honey helped and i got used to it and loved the taste over time and the bonus is it firmed my boobs.

Then I made turmeric black pepper and ginger pills with honey as the binding agent and took those 4 or 5 like pills.

Then the lupus and raynaud's phenomenon hit, to be honest I took prednisolone after a while i stopped cause it affects the bones so i started taking hemp powder in hot beverage at night, it calmed the flare ups for me and then the degenerative disc condition started so am not taking thyme, rosemary and cinnamon powder also in tea or beverage plus Nucleo C.M.P forte 2x daily plus pregabalin-75mg 1 at night cause it makes one drowsy.

Hope we find healing which ever way we turn💚

[overdrive67]

Try and stick to a healthy diet as much as possible and do your own extensive research on Chinese, Indian and African natural remedies 😊

[Graystar]

Hi Babycakes1971, I went through the menopause with Lupus and other medical conditions and it definitely caused more flares. I became so unwell I went for early retirement. I didn’t take HRT but I know if I was going through the same now I would seriously consider it. It’s not just hot flushes and lack of sleep. The menopause can really affect your mental health too and impact upon your confidence and memory. I don’t know how HRT interacts with the other medications you’re on so personally I would do my research first but it may just help you through this difficult time.

[Babycakes1971]

hi ladies. Thank you so much for your brilliant advice and experience. I have an appointment to see my dr and rheumatologist so I will go armed with this advice. I really wanted to ride it through but the symptoms are now quite bad and my bone situation is rather dire as my OA and osteoporosis has very much deteriorated. Thanks again x

[Roanna]

Hello Babycakes1971, I’m there with you all, mind my memory issues please. I’ve had sle since 17 years old, nephritis soon after, many years on different meds. Chronic neutropenia now since 2016 when I has hysterectomy due to pre cancerous cells. Then all hell broke loose with hormones. Tried every natural thing I could for years, nothing helped. People commented about my black bags, I felt self conscious about my memory but couldn’t afford to not work.

I read a women’s magazine about HT and it was brought up about those that can’t should try a neurological pain killer called Gabapentin, also helps with sleep. My psychiatrist approved it due to my chronic neck pain and at a low dose and but bye hot flashes. If I have caffeine I mess up but I started having the best sleeps in my life. I get immune to meds fast now so nothing was working for my sleep and active mind. I know there have been some questions around gabapentin but they have meds similar that do the same thing. Please ask about it. I tried the HRT vag creams for a bit with little help.

Best of luck to you.

[Babycakes1971 in reply to Roanna]

Thank you roans. That's interesting, I have heard of gabapentin but I was given nagopam by the pain clinic but if all these menopause symptoms kicking off it's stopped working😴sleeping sweats and dryness with bone issues are my biggest symptom and now dizziness.

[JenniferW]

I started on HRT a couple of years ago. I checked with rheumatology first and they said that nowadays they are happy for their patients to take HRT. HRT has advanced over the years and the patches available are much less likely to cause blood clots. I have found the HRT to be a life changer. You don't have to take it forever, some people need it for a year, others for longer.