Hormonal pills estrogen progestine

[miccika1]

Does anyone have experience with birth control pills? I am takin progesterone only 10mg each day and that increased my energy but i still have a flare every two months or so. My endocrinologist suggested Progestine and small amount of estrogen so that both hormones stop having swings. With progesterone only, the estrogen is still having ups and downs. I avoided estrogen since it exasperates lupus, but if i keep it low at all times w this pill maybe that would be ok? Anyone had any therapy that included estrogen?

[milkwoman]

It’s all about balance - you need enough progesterone to balance out the estrogen.

I’m on HRT since I’m in menopause. I’m on a custom compounded combo bi-est cream (estriol and estradiol) with progesterone. I apply the cream am and pm. It took a few months to get the concentration and ratio correct to alleviate my symptoms and I’m now there - yay!

I had tried estrogen patches and oral progesterone but we just couldn’t get things balanced so I consistently had breakthrough bleeding issues. In addition, the oral progesterone caused me GI issues, headaches and weight gain (caught that quickly - phew!).

[Waldo18]

Hi Miccika,

Did you try out the estrogen + progesterone therapy after as your endocrinologist suggested?

I have similar-ish problems. My symptoms are flaring following my menstrual cycle. I get acutely unwell each month when my oestrogen spikes and then lots of joint aches and pains and fatigue in the following days. I also have a skin condition in an embarrassing place that seems to be flaring with high oestrogen times in my cycle. These flares effectively wipe me out for the two weeks pre-period. I’m on a progesterone-only mini pill (desogestrel) for the past two months-as I was found to not be ovulating -and was offered cyclical progesterone or the mini-pill.

But despite taking this pill my estrogen is still fluctuating in the background which is really driving my flare-ups.

I’d love to know if adding the oestrogen helped you reduce your flares further?

I’m being given the choice of switching to a combined pill to stop the swings in oestrogen each month, or else take cyclical progesterone (to treat my gynae symptoms-not ovulating). but like you I’m very concerned about trying anything containing oestrogen in case it worsens my lupus symptoms.

Unfortunately I’m only being treated by my GP and gynae for this, who have limited knowledge of lupus and autoimmune issues. I’ve been to two Rheums but both didn’t really want to know about this cyclical element and just said I’ve overlap fibro and gave me pain meds which I’m not keen on when I can see a clear pattern/interaction between my hormones and autoimmune issues.

I’m in the early stages of this and I don’t have a clear diagnosis-most likely lupus-like syndrome or mixed connective tissue disease is what I’ve been told. It’s not yet under control-I started plaquenil 6 weeks ago but I’m still deteriorating.

The link to my cycle and oestrogen is overwhelmingly obvious to me. It’s as if my body is attacking sources of oestrogen (when my cyclical ovarian oestrogen is low my gut issues flare up-which I believe is also a source of oestrogen). But I feel very much alone in my trialling these various hormones and drugs-my GP is refusing to send me to an endocrinologist as other than v high ANA and hormones out of whack I have no other indications for anything.

Apologies this has turned into a long ramble- as I say-id love to hear if the combined pill/oestrogen has helped you/anyone who is struggling with cyclical flares linked to oestrogen?

Thanks

Debbie x

[miccika1 in reply to Waldo18]

Hi Debbie, i didn't end up adding low estrogen to my progesterom routine. I went to gynecologist and the talk went somewhere else and i didn't get to ask about it. I will let you know if i end up trying it. It is concerning that you are deteriorating.bplease try other therapies. Plaquanil is a mild medication (it did help me tremendously w joint pain) but maybe you need something stronger. Many of us stabilize w some prednisone and an immunosupressants...you need to find the right cocktail of drugs for you.

[Waldo18 in reply to miccika1]

Thanks for your speedy response miccika1!

I think you’re right regarding additional meds to stabilise it all, I was a bit slow to go near steroids all along as had a v bad experience with them last nov. My GP put me on them as an attempt to boost me up after glandular fever in March 18 and after seeing my high ana blood test. However I was only put on for two weeks and then tapered over a further two weeks. After that I developed a whole host of new symptoms and deteriorated -shingles, tinnitus, cycle going haywire, new aches and pains and new skin probs. So I felt for a long time after that like the steroids were to blame. But in hindsight I think it was the tapering was the problem-and I don’t think my GP knows enough about autoimmune stuff to understand the impact that can have on someone with an autoimmune illness. I have an appointment booked with my rheum for next week and hopefully will get an appointment to see my gynae soon as well. My biggest prob is that my lupus/autoimmune issue is presenting in my ovaries/skin down there - but my male rheum doesn’t want to know about that and my gynae doesn’t seem to know much about autoimmune issues-it’s super frustrating feeling like I’m falling between stools but hopefully I will make progress and at least get the flare under control in the next week or so

Thanks again for your help -and keep ken posted if you pursue that route!

Deb x

[miccika1 in reply to Waldo18]

you male rheum sounds incapable. Try getting a second opinion w someone else as he is not addressing your main concern. Also often skin issues including autoimmune skin issues are dealy with by a dermatologist. See if there is a good dermatologist you could see that has experience w AI conditions.