Going off hormones

[suebehar]

I've been on a low dose of hormones for menopause. My gynecologist has wanted me to stop taking hormones because of the risks.

I have gradually gone off the meds and what I am finding is that all my lupus symptoms are much worse. Has anyone gone through this, and if so, does it get better. I'm not sure if I should stay on the hormones or not.

Thanks,

Susan

[lin]

I was on hrt patch, i have to say i stopped it my self, but no to answer your question i was ok, that way

Why did your Gp want you off them, if you were only on low dose??
sorry your having worse problems now,

For me i thought to much about what if, so i was better off without it, funny though my rheumy wsant happy either with it.

sorry no help Lin xx

[Raglet]

um, what risks?

This is definitely just mho, but if your gyne is talking about the WHO trials, then I think the risk is over-rated.

The additional risk in strokes etc was statistically just tiny. Something like an extra 8 women in 10,000 had a stroke than would be otherwise be expected, which is awful for them but honestly that increased risk truely microscopic and is something I am entirely comfortable with. That is a 0.08% increase in strokes, which is truely tiny.

Also, it was actually the progestin (provera) that was the culpruit as premarin only trial was not stopped - if you live in the States then you can go on progesterone (prometrium) which is chemically identical to our own natural progesterone and is even safer, if you are not comfortable with this tiny risk

Ok, I confess, this is a soap box item for me hehehe, and i am also assuming that it is these sorts of risks that your gyne is concerned about. HRT for a few years is pretty safe in my not so humble opinion.

cheers

raglet

[Lily]

Hi Susan,

The main reason many docs tell a Lupus patient to go off hormones is if they have APS (antiphospholipid syndrome aka Hughes) because there is an increased risk of clotting.

Other than that in the 'normal' population there is much variation between what docs recommend. If you have a strong family history of stroke or breast cancer they are quite reluctant to prescribe it. Here in Australia the current trend is to be on it for just a few months if possible, docs dont like to recommend more than that just to cover their own backsides in case something should happen.

Trends change as more information is gathered and unfortunately it takes time to uncover that information, years and years :(

It's worth getting another opinion especially from your Rheumatologist, thats who would be more in tune with your particular situation.

love
Lily

[peonyprincess]

I used to be on HRT's as well, but was taken off of them over a year ago. It was a little divvicult, in as much as I had to start dealing with hot flashes, etc again, but other than that I do not think I have noticed anything. Now, I rarely get them, but of course it is only 22 degrees out currently so all is well.

Good luck. I hope you can get your meds straightened out.


Nancy

[DressageRider]

I had a complete Hysterectomy 2 years ago and at age 40 I went into full menopause. I thought it would be a couple of months of hot flashes, mood swings, etc. then it would all be passed. Due to my medical history with endometriosis I opted not to take any hormones. Within 6 months of my Hyst I was diagnosed with Lupus. I'd had symptoms for several years - but not bad enough to do anything until after my Hyst - so I KNOW that hormones are involved.

I continued to suffer through worsenening hot flashes until January of this year (22 months after my Hyst). I BEGGED my GP for hormones. I was sick of it all. He was afraid it would complicate my lupus, so instead he gave me cymbalta. I gotta say it has really worked. I feel so much better. I still have mild, occasional (maybe 2 a day) warm flushes - that that is so much better than 7-8 scorchers a day. If you must go off hormones - consider Cymbalta. It's been a life saver for me.

Janet

[suebehar]

Thank you for your advice and sharing your experiences. My rheumy also wanted me to stop taking the hormones. I've been on them for over 2 years. I tried to stop (gradually reduced the dose until I was off) six months ago and my Lupus symptoms got so bad, I went back on. I have again gradually reduced my dose and now I am off and hoping that my symptoms don't increase again. It's so hard to know what to do and not do when you have Lupus. It is such a trial and error disease! And then, it's always different.

[Maia]

Well, the HRT risk also relates to breast cancer going up. In the few years since teh HRT study was halted and initial results made public early, breast cancer rates have dropped pretty dramatically in the US. These results were just made public this winter and while no one can PROVE that breast cancer rates have dropped like 5%-10% due to women discontinuing or not starting hormone therapy, it is the belief of most reputable physicians and statisticians.

[Raglet]

hi Lily

it's true, most doctors will tell you that all APS patients shouldn't be on hrt, but that is because they haven't taken the time to read up the difference in clotting profile between transdermal and oral hrt. And usually they don't consider whether or not the person is anticoagulated or not.

It's very revealing to ask them if they have read this literature, the answer is invariably 'no'. It's outside their field, and they just don't really see it as being important.

I did a lot of research into this, consulted with a very experienced RE (reproductive endochrinologist, they are the true experts in the field of hormones, not gyne's), and the answer was that a transdermal hrt does not have the same clotting problems as oral estrogen. It's to do with the liver, as transdermal does not go through the liver as it is absorbed through the skin.

Yep, this is a soap box of mine, I went through a very abrupt overnight menopause caused by cytoxan which shut my ovaries down overnight, 10-15 years too early. So my menopause was very extreme, which is what made all the extra research worth while.

My doctors are comfortable with me being on a low dose patch, especially seeing I am on warfarin (coumadin). Even Dr Hughes, the great APS guru himself, does not rule out hrt for women who are fully anticoagulated, as I am.

I think this is very important information for people with aps who are suffering from severe menopause symptoms, which are miserable. Hormones are meant to taper off gradually over the years - and the body produces hot flushes etc as it gets used to the lower dose. So for those of us who don't get to do the gradual taper, life with overnight menopause is pretty extreme.

Actually, I have even gone to the lengths of taking myself of my patch to absolutely ensure that it wasn't causing any of my problems. All that did was increase my hot flushes etc, and after 6 months of no change at all on the lupus and APS front I went back to my low dose transdermal patch. My estradiol dose is now very low, as I feel as though seeing I am in my mid 40s it is natural for my estradiol levels to be dropping.

The other thing about estradiol (estrogen) is that it plays an essential role in bone health. A combination of hrt and calcium has kept stopped the slow but steady drop in my bone density, which has been just great.

I do wish that these doctors would get themselves educated - they just don't see it as being important. Some of them however have been known to change their minds about it once THEY reach menopause ehehehe

cheers

raglet

[breault]

I am on Prometrium & Estrogel and my rheumatolgist has no problem with that. I also have LUPUS, possible HUGHES &/or CREST. I'm not about to go off the HRT as my constant Hot Flashes (severe) just made my LUPUS flares worse. I was actually hoping/thinking that when I started the HRT a year ago that all my symptoms would go away. I blamed menopause for everything... boy was I wrong. But if the HRT keeps those symptoms away it enables me to cope better with the pain/fatigue etc. of the LUPUS.

Just my experience I guess it's not for everyone. Oh PS - I could never use the synthetic progesterone, not kidding was on it once years ago & it made me feels nuts.

[tlb33]

hi
i was also on a low dose of horm.and my doctor took my off them. i asked him why and he said because of the lupus and high risk of blood clots. my reply was what about the hot flashes which are a curse right now.nothing seems to work i wake up just driping wet. they put me on neurotin which did nothing at all now they have me on clonidine which i have only been on for a week.i hope it works cause the hot flashe are making my life unpleasent.