[Salopsally]

Just wondering if anyone has any thoughts or experience of HRT with Lupus.

My new GP seems to think some HRT would help me cope with my menopause symptoms so making it easier to cope with the Lupus and the Fibro too.

My old GP was never keen on HRT and always said its best to cope on your own the best you can.

My new GP has been asking for advice from the Rheumatology department as she doesnt want to interfere with their long term plans for my treatment. Getting a reply from them though is proving to be as rare as rocking horse do do.

Be interesting if any of you very wise older ladies have had any experience of this. (Did I say older? whose older? Not us! I wont tell if you wont.)

Cheers
Sal x

 

[mamascan]

Salx,
Hello! My experience with HRT was somewhat brief. I was having alot of perimenopausal syptoms:hormone migraine clusters, flashes, night sweats, mood swings, etc. In 2000 I was put on PrePro and it worked wonderfully. Except for the "age spots" from sun exposure. In 2003 I started having pain issuses, insomnia, biomechanical problems, etc. By late 2003 Lupus and fibro and sjogrens were suggested and the testing began... I was immediately taken off HRT and although there were a few adjustment issuses I have learned to live with it. And its been discussed by PCP & rhuemy that some of these may not be menopause but lupus/sjogren/fibro related. I've also heard and read that HRT can cause problems with lupus but I can't remember if its flare related or not. Someone will come along who is more knowledgable than myself to answer these for you. Hope this helped.

Michelle

 

[Salopsally]

Thanks Michelle for your experiences.
Must have been difficult with not having a firm diagnosis. Never knowing what symptom is what. Seems like some menopause symptoms also overlap with Lupus and Fibro. My goodness how are we meant to know what is going on.
Thanks anyway. Hope you are feeling ok today.
Sal x

 

[doreen]

Hrt

Hi, I have been on HRT for 15 years due to an early hysterectomy and only came off it 2yrs ago for 12 months. The result was dreadful. I had really bad flushes and could not sleep and the stress made my lupus much worse. My rhume told me that lupus is at its worse during times of hormonal changes. My doctor gave me HRT back and within weeks I was back to normal and coping with my lupus once again. You have to weigh up all the pros and cons of HRT, but when you have lupus as well you need some quality of life.

 

[Clare.T]

Hello Sal

I am sure the decision is individual and personal even when we can access the best advice. You have to weigh everything up.

This is from LupusUK, a talk given in 2006 at their annual conference based on the findings of the SELENA trial of post menopausal women with lupus

HRT and SLE
A recent study called the SELENA study2 looked at the effect of hormone replacement therapy (HRT) on women with SLE. In this study 174 women took HRT and 177 women took placebo (dummy medication). The results revealed an increase in mild/moderate flares due to the HRT, but no increase in major flares and no overall change in disease activity between the two groups. The long term use of HRT is generally declining due to the increased risk of breast cancer and also strokes and heart attacks associated with its long term use. It must be remembered that patients with SLE and Hughes syndrome are already at greater risk of strokes and heart attacks due to accelerated atherosclerosis. We would therefore only recommend the short term use of HRT for treatment of severe menopausal symptoms in women with SLE provided they did not have severe/active SLE, their blood pressure was normal and there was no history of breast/gynaecological cancer.
HRT should be avoided in antiphospholipid antibody positive women with a previous thrombosis and in women with severe migraine.

http://www.lupusuk.com/currentissues.asp

I seem to think that 'incidents' were markedy higher in those women who got the HRT compared with those who got the placebo


I participated in this trial but it was a disaster for me lupus wise. My major symptom was hot flushes post menopausally oddly enough, otherwise I doubt if I would have participated. My lupus flared big time as bad as it had been before menopause. It was also a disaster gyny wise because the estrogen fed uterine fibroids and I started having full scale periods worse than I had ever had before. I had no special risk for osteoporosis which at the time was considered a major benefit. Reducing the osteoporosis risk is dealt with other ways these days. So I experienced the same old ghastly cyclical pattern except worse and withdrew from the study.
I think it's possible that a different form of HRT might have been less damaging but of course everybody in the study took the same dose except for those who were on the placebo. It was also double blind with neither the participants nor the doctors knowing who was getting which. For me it was a no brainer and I dealt with the hot flushes other ways.
Interestingly the lupus expert I started seeing afterwards said that he would not have let me go on the trial - he was against any hormonal intake.

If you have the contraindications mentioned I should think you would have to think very seriously about it even if your docs were in favour and it would depend I guess even short term how bad the MP symptoms are.

Good Luck

Clare

 

[Lis]

Weighing up pros and cons of any medication can be difficult and has to be an individual decision made with full medical support. I was put on HRT 18 years ago following a full hysterectomy (with my ovaries removed) and have not experienced any significant complications linked to my lupus/sjogrens/scleroderma. However, my lupus etc is mild compared to most here. I do worry about HRT for other reasons - i.e. taking it for so long given all the reseach but my rheumatologist and GP feel it is safe to continue for now and don't think it will affect the stability of my lupus.

 

[Salopsally]

Thanks all. Thats all very helpful. Food for thought.
I dont have APS but have had a DVT and also quite a few bouts of phlebitis so that has made me think Clare.
It would be nice to get rid of the hot flushes but I suppose there are worse things to cope with.
The increased risk of breast cancer of course is a bit worrying too.
I probably wont go down that route it was just a thought. The thought of having 'hormones' again was quite attractive.
Was thinking... suppose we are lucky in a way to have this quandry. A few generations before women didnt usually live way into the menopause. Nowadays we all want to be young forever. I suppose I will have to grow old gracefully and naturally lol.
Thanks again.
Sal x

 

[Raglet]

Vitamin E, EPO and linseed (Americans call it flaxseed) are also really great, and no problem for lupus.

I take vit e and epo along with my regular meds, plus I sprinkle ground up linseed on my breakfast.

I have also gone the hrt route - I went into premature menopause in my 30's due to cytoxan (chemotherapy often closes down the ovaries). I couldn't have survived without hrt because it was so sudden and so severe - with natural menopause the estradiol levels drop gradually so the body has more time to adjust. My estrogen levels plummeted overnight, no I had no chance to adapt. The only thing to do was to replace the estrogen with the aim of tapering off it at an age when I am meant to be going through menopause (which I am at now, in my 40's).

I am on a very small dose of transdermal hrt (a low dose patch cut in half) and plan to reduce my dose even further very shortly.

I have tried going off it altogether, and honestly it just made no difference to my lupus. I just have severe lupus with or without hrt, and I really really like the positive effect it has on my bone density given that I am on permanent oral pred and have frequent high dose iv pulses of pred.

But, the natural stuff works fine too, and if you are going through a normal age meno then it may be all you need to give you a helping hand. If I forget any of my natural stuff I really notice the difference.

hth

raglet

 

[Salopsally]

Thanks Raglet,
Thats a good idea. Never thought of the natural stuff. Will look into that. Im lucky its just a natural process for me.
Hope things go ok for you when you reduce your HRT.
Ive been on prednisilone for 2 and a half years now but on low dose now and take Ibandronic Acid (Bonviva) once a month to protect my bones.
Dont know if its worked though as never had a bone scan. Dr said no point coz if my density was low he would just put me on what I already take.
Thanks again.
Sal x

 

[DanTheWolfman]

Me Man thinking of doing Self HRT for Energy Plus DHEA/Zinc etc

Why were you using EPO?

My DHEA, TT, Free Test all VERY LOW, while my Estrogen is high

So thinking about doing self HRT protocol

Have you all used DHEA? Monotized 25 mg pills or in higher doses? thoughts?

Where your DHEA levels tested and low as well? Mine is like 165....apparently all Lupus patients low DHEA but all studies are on woman so I am screwed generally speaking

I am 34 1/2 btw and also Sjorgens

 

[greenhaggis]

This is an old thread and will be closed due to this reason.

If you want yo ask members about DHEA it would be worth starting a new threa of your own