Hi there,
I would love to hear from any body who has APS and who is, or has been on transdermal HRT. I am speaking with a menopause specialist tomorrow, as my symptoms are now having a dire effect on my life. I'm scared, because although on Dabigatran, I know we are advised against any form of HRT when we have APS.
Look forward to hearing from you.
Best wishes,
Honey Monster.
Please make sure that your main Hughes Syndrome/APS specialist is in the picture with this decision and your GP. I have natural transdermal progesterone, but I am no on Warfarin! MaryF
Hi there,
I have just spoken with Dr Louise Newson, who is a menopause specialist. She has reassured me transdermal HRT does not cause the blood to become stickier. She is working with Prof Beverley Hunt to write guidelines for women with APS who may benefit from HRT. She is also sending lots of information for my GP.
I feel extremely fortunate to have had the opportunity to talk with her.
I am speaking with my APS specialist next Wednesday, so will not start the HRT until after then. I am on dabigatran 150mg twice daily currently.
Thanks for replying.
Honey Monster.
Good, you are in safe hands, as Prof Hunt did publish something about that, many months back. MaryF
Thanks MaryF - that's interesting.
I'll try and look for that publication.
Hi there , well I have Primary APS diagnosed only recently after Myocarditis and some weird symptoms, touch wood no clots as yet , I just take Clopidogrel ! I have been on HRT , gel and mirena coil for 20 years and I have absolutely loved it , it's kept me well and active and comfortable where it should , hair and skin and energy etc , however, since my diagnosis I have been told to discontinue it and I'm gutted , I was told that it will increase my chances of clots as it makes the blood stickier! Choices !!
I would love to hear what your gynaecologist has to say because as yet I haven't seen mine! Good luck in any event , it would be great if there were any safer alternatives!
Hi there!
Great to hear from you.
I have just spoken with Dr Louise Newson, a menopause specialist. She has reassured me that transdermal HRT does not cause the blood to become stickier. Excitingly, she is working with Prof Beverley Hunt to update the guidelines for women with APS. I believe the info currently available is largely based on oral HRT, which would not be advisable. So hopefully, new guidelines will soon be available and transdermal HRT will be allowed. Fingers crossed.
I'll keep you posted how I get on - I'm speaking to my APS specialist next Wednesday.
Take care,
Honey Monster.
I would also love to know what your specialist says. I developed a DVT and subsequent PE with dx of APS 2018. Now on warfarin, no further problems.
But I had been on oral HRT and feel this provoked condition.
Have read transdermal might be possible. Mainly interested for bone protection.
Interested in others experiences
Hi there,
Great to hear from you.
Sorry to hear of the horrible time you had in 2018 - glad things are better now.
You are absolutely right, according to the menopause specialist I have just spoken to, oral HRT is a real no-no for anyone with APS, transdermal, because it doesn't go through the liver, is OK. She is currently working with Prof Beverley Hunt to rewrite the guidelines for women with APS as they are based on old HRT, so there is hope for the future.
She has prescribed transdermal for me, I'm speaking with my APS specialist next week and will discuss it with her then. Any probs, I might just refer her to Dr Newson!
I'll keep you posted on how I get on.
Take care,
Honey Monster.
Thank you so much! Live in rural state without nearby APS specialist. Appreciate your help
Hi
I have Estradiol pessaries and have been fine so far. have been on them for two years.
Stay safe
Kaz
Honestly this is the best news , I'm uber excited , obviously I'll run it past my gynaecologist, two heads are better than one and also my doc! Thanks so much for the update and I'd love to hear how you get on ! Thx
I'll definitely keep you posted.
Thank you 🙏
No longdr-- menopause some years ago(" Bye. Bye! Its been real, but won't miss ya,") and for a while I was on a locally compounded dermal progesterone. Felt great! No interactions with APS.
Thanks GinaD. That's interesting.
Honeymonster,
I have APS and opted to follow recommendations from my rheumatologist. I have been drinking 2 servings of soy milk a day, and taking 1 Maca Root pill, which is over the counter in the US. These have helped me with hot flashes and insomnia a great deal. I hope you find a solution that works for you.
Michelle
That sounds like a good plan.
I have tried various 'alternative' options, which sadly didn't work for me.
Thanks for writing.
I have asked my GP for transdermal HRT and refuses as I have APS (triple positive) although I would hope he may change his mind if he could see some kind of evidence that its acceptable to use. I tried to google info on this and nothing much has come up. Do you have anything in writing or anything that she has published that I could show my GP. Been living with depressing hot flashes for months now along with the anxiety with it too, am desperate to try something that works, and believe me ive tried all the natural stuff already. thank you for posting.
Hi there,
I know Dr Louise Newson has lots of info on her website. I'm not sure where to find the papers written by Professor Beverley Hunt on APS and HRT. The guidelines are currently under review, so fingers crossed it won't be long before they are released.
My APS specialist has asked me to hang fire on the HRT as she wants to do her own research. I think I could be waiting a long time to get an answer from her, but when I do I'll let you know.
I'm going to Dr Newson's Menopause Clinic in July (all being well) and I'll ask her about Professor Hunt's work then.
Take care,
Honey monster.x
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