HRT ??

[Tmal1987]

Just wondering if anyone on here has been prescribed HRT since diagnosis.... My GP has suggested it to help with my osteoporosis but the rheumatologist is sitting on the fence and has said if I want to risk it..... then it’s down to me...

[Tmal1987]

Many thanks.... shall follow this up 👍

[MaryF Administrator]

I use bio identical progesterone, have been on it for years, a natural product, but please do not try it unless under supervision. Also transdermal medication like this is not the same as taking a hormonal HRT pill, they work differently and less dangerous for people with autoimmune conditions. However I would not start on anything unless under a doctor such as one of mine who is Professor B Hunt at St Thomas' Hospital. MaryF

[MaryF Administrator in reply to MaryF]

I will also add that I was prescribed this, literally years ago, a different sort but still the same principle, well in advance of any disease showing up, officially, clinicians and patients still have to be terribly careful, and of course they make these decisions, not us, as we are not medically trained on here. Everything I do with my mix of diseases is carefully monitored beyond myself by many very good specialists. KellyInTexas etc. MaryF

[HollyHeski Administrator]

I was advised no, due to having history of clots and this was before I was diagnosed!

I would go with the advice of your consultant that has the knowledge of Hughes/APS, that way all the facts can be looked at, your clotting history, your anticoageration, the % of improving your menopause symptoms against the risks etc. There also maybe other drugs with less risks that you could try first?

[KellyInTexas Administrator]

I was told the same as Holly, as APS is a very aggressive clotting syndrome compared to other reasons to have a DVT. ( It depends on the reason for the DVT.)

However, reading Sticky Blood Mentor’s response to you is making me feel very ... dare I say... mournful - for HRT!

She certainly has a top notch Specialist!

Is there a way to try the lowest dose patch possible, and at the slightest sign of a return of ,” sticky blood symptoms “, remove the patch immediately?

Do the hormones leave the system quickly?

Are you the sort of APS patient that knows when the blood becomes too thick right away? No sudden stroke with out precipitating symptoms?

@StickyBloodMentor, what can you say about these thoughts?

[Stereolover]

When I was diagnosed with APS I had to stop HRT immediately. Luckily for me I had no menopausal problems. I hope the same goes for you too

[veganworld]

hi there

I have vagifem vaginal tablets. They are small tablet size pessary that you simply insert into your vagina once a week. No side effects and work brilliantly. My GP will only allow these because of APS as they are only mostly absorbed into the vaginal area. However they do make my hair and skin less dry and they are just right. As with the other answers I am on warfarin for APS and I suspect I would not get these if I were not on blood thinners.

They are brilliant for vaginal soreness and dryness and loss of libido.

Good luck x

Kaz

[GinaD]

I used transdermal, compounded ( made by local pharmacist, had to stay refrigerated, no added preservatives, etc) back in the day when I was menopausal. I never had any clotting problems and .i sailed through menopause quite gracefully. I did have osteopenia, but that appears to been due to malabsorption gut issues because after going gluten free I recaptured an inch of lost 1.5" in height and went from osteopenia to " My! Your bone density is like that of a 20 year old!"

[KellyInTexas Administrator]

Thank you, SBM.

[Tmal1987]

Thanks guys.... definitely food for thought. Although I saw the menopause without a problem my bone density is dire due to steroids and provera!! GP thought HRT was my best route as an Alendronic infusion gave me jaw / dental problems.....

Hoping to get a referral to see a specialist pretty soon as it appears most medics ( as you point out) really do not have a clue....

xx

[diane1428]

If you also have SLE it’s a no no as it can give blood clots. If not it may well help

[diane1428 in reply to diane1428]

Sorry having a faulty day meant a no no if you have APS.

[MrsMouseSJ]

Hi. I'm on a transdermal patch: Estraderm 25mg. My menopausal symptoms got to the point where I was suffering terrible anxiety attacks, low mood, worsened sleep issues, new joint pains and aching, constant irritable mood, my poor memory was even worse, I was making mistakes that were hazardous, etc. I looked at the current evidence available (using NHS and other 'bona fide' resources) and my reading is that oestrogen only supplementation, particularly using the patches - which use the exact form of oestrogen produced by the body (17 beta estradiol), carries a very low risk of side effects. Which I would be happy to accept if my menopausal symptoms were improved; which they have been. I didn't have the 'typical' symptoms such as hot flushes or night sweats, and so my GP didn't wish to prescribe the patches for me. However I put a case together to put to my rheumatologist and he was happy for me to try the patches, provided I remained reliably anticoagulated (my INR runs between 3-4). My GP then went with the rheumy's view. I should also say that, pre anticoagulation, I have had three episodes of pulmonary emboli - before the APS was known about.

It's a very personal decision this, and I think you have to go with your gut. And be prepared to stop, should you start HRT, if you don't feel right on it.

[Raw57]

I used an estrogen spray before I had my first DVT. My gyn took it away from me. I was so sad. I told him if I committed a crime of passion it would be his fault. 😉 well, I was able to control myself and my body adjusted. But I loved it. 🙁

[Stereolover]

I was on HRT but Prof De Cruz told me to stop them immediately so into the rubbish bin they went. Luckily I sailed through my menopause which started as soon as I had a hysterectomy aged 37.