Since we are already on blood thinners, is it still recommended we don't go on hormone replacement (HRT) for menopause?
I've been doing some reading about it and all I can find is info on women who have a history of previous clots, but nothing about having APS... but we've had clots.
The info states that you can take HRT if you get on anticoagulants. I'm wondering if I can actually get some relief as an APSer or are the articles just referring to women who have simply had clots without having APS?
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mylafont
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Hi mylafont, in my case (premature menopause without history of clots and no blood thinners) the APS specialist has just decided no HRT (even though I already have osteoporosis as well, they wil have to use a different treatment for that). They just did not want to take the risk. Again, this is without clots and without blood thinners.
I wonder if "bioidentical" hormones like estradiol delivered via a patch (Climara is one) might be ok. Have read (then again, you can't believe everything you read on the Web) that bioidentical delivered via a patch straight into the bloodstream is very different and much safer in regard to blood clots than is Premarin, made from horses' urine and the usually prescribed HRT.
I have taken a low dosage (0.3 mg) HRT titled Menest . It is VERY mild and does NOT contain the ingredients found in Premarin. I did take Premarin for a time which made me very sick. (Finally, through allergy testing, it was discovered I have an allergy to horses and also their urine). My former Rheumatologist/Internist/Osteopath started me on MENEST, a low-dose, 0.3 mild HRT therapy that is given to elderly women to avoid bone breakage. It is a lesser known medication sometimes used for people who have Osteopenia (helps to keep women from developing full blown osteoporosis). It works well. Menest has NEVER interfered with Coumadin (warfarin) therapy or any of my other medications. I take Vasotec for hypertension, Procardia XL for Raynaud's, Metformin for Type 2 diabetes, Synthroid for hypothyroidism, Vitamin D-3 and and allergy medication. Maybe you could ask your doctor about Menest. Maybe your doctor could look at the medication MENEST for your HRT. My pharmacist told me that Menest is the HRT of choice for older people to keep them from breaking bones and an alternative to the newer bone protecting drugs (ex: Boniva, Prolia which cause reactions in many women). By the way, I did have blood clots and Menest has not contributed to further clotting problems. Ask your doctor to look further into the use of this medication. I hope this information is helpful for you. Good luck!
Hi, im in exactly the same position. the experts are consulting the experts, seams no one really knows. I'm so fed up with it all. Ive had the haematology expert saying HRT is fine as Im on riveroxaban, gyny expert referred me on.....My 3rd expert is now researching testosterone gel for me. as he thinks that could be ok. All don't know,don't want the risk....as there is no data. no one collects or collates the data. (women menopause... who cares. it will pass) its just a bleak.
what is disappointing about this site is that data- experience is not collated and therefore there is no guidance for us or the professionals. yes this comes up several times a year....
I'm seeing my expert soon, keep in touch and lets compare info.
yes everyones medical prob are individual, (thats the advice on here most of the time) but so much is common.Its like reinventing the wheel! Rant over x
My thing is, if we are already on blood thinners, and in my case, lots of them... are we still at more of a risk than someone who has never had a clot or stroke?
Wow. How much do you take? That is definitely something to seriously consider. I take quite a bit but am just wondering about this cuz the symptoms of menopause are getting on my nerves at the moment and interrupting relations with my husband.
I take an average of 15mg daily with one day higher or lower depending on INR test that day.
I am not going to risk it. Mostly wondering if anyone has heard of alternatives.
How much Warfarin you take isn't relevant tbh some are more tolerant of Warfarin than others, I only take 3mg and have an Inr of 4.5 today and it's nearly always very stable. My point is it's easy to get a false sense of security when in range and symptom free. The Doctor's tell me it shouldn't have happened, well I know that but what's going to stop a repeat? They're trying to figure that one out.
First of all I wonder how you are today. Have you very bad symptoms from your last stroke?
I do not know how often you test your INR at a lab as you do not selftest. I selftest every second day at home and the INR may change from 5.0 to 4.0 in one day. There can also be bad testing at the lab if they do not send the blood quickly enough after it is taken to get the INR-result. (An INR of 5.0 on my Coaguchek XS is about the same as 4.0 in the vein.)
I wonder if you have asked your Specialist of APS to change to LMW Heparin instead of Warfarin. Then you do not have to test and you can eat what you like and not be afraid of bleeding when you go too high in INR as you do not have to worry about INR at all.
Are you triple-positive with Lupus Anticoagulant? We can have difficulties with rather erratic INR.
Decide for yourself. We are all unique with individual problems even with the same illness.
I was tested today and it is 4.5 I have a stable Inr as a rule, it was tested the day before the stroke and the day of the stroke. The point being having an in range Inr doesn't mean you won't have a stroke as I proved. Why would I ask to change to Heparin when I'm symptom free on Warfarin.
You have had a stoke on Warfarin!! Then something is wrong! A stroke is a symptom of APS.
Also I think that an INR of 4.5 and also Aspirin (do you take that also?) is quite too high and dangerous if you are not selftesting which you have said you are not.
Do you have Lupus Anticoagulant and the two other antibodies? In that case you can have an INR changing a lot (see my eerlier answer today). I totally agree with you that the amount of Warfarin you take is not important. What is important is the INR! And that you know you are protected from a stroke when you are properly anticoagulated.
If you have a stroke and are on anticoagulation (in your case Warfarin) something is wrong. Either Warfarin does not suits you (do not why as I am not a Doctor) or you are not in range all the time. What was the INR the day before the stroke?
When I get an appointment I will discuss it fully with the Doctors. Obviously something is wrong or I wouldn't have had a stroke and as it's my 3rd I'm not best pleased but as I said having an in range Inr doesn't guarantee you will not have a stroke. You'd think you were properly anticoagulated if you have an Inr of 4 and no symptoms. How else can you know you are properly anticoagulated until it becomes plain you're not because you had a stroke?
I have been on Warfarin for 3 years, my last stroke was 4 years ago, I was initially on Aspirin then Clopidogrel but when diagnosed with Aps 3 years ago that was changed to Warfarin. I had no Aps symptoms prior to diagnosis other than two strokes and had only minor symptoms since. I therefore had no reason to question my treatment. I have always been in range and have no problem keeping my Inr stable.
The Doctors have not altered my dose today even with an Inr of 4.5, don't forget it was 4.0 on the day of stroke. I have no bleeding issues, no nose bleeds or bleeding gums when I brush my teeth, no bruises either.
Yeah thanx, I've already convinced them to add Aspirin to the Warfarin, did that as soon as I saw them. No I do not take Plaquenil as well as I've never had any symptoms to indicate it may be needed.
Highly unlikely the tests are faulty as they aren't always done in the same place, some at hospital from blood draw and some at warfarin clinic finger prick and they are in range.
If you are Lupus Anticoagulant, as I have asked you before, the fingerprick test and the blood draw in the vein may not be the same at all. The thickness of the blood is exstremely important for us to know of. If it is too thick at a special moment we may clot.
When you self test that is a finger prick test. When I am tested at clinic it's a finger prick test so no different. When in A&E it was a blood draw and then two days later a finger prick at 5.7 and today at 4.5 so at the time of stroke or within an hour or so it was 4 since then it has been above range. So as it has been in range for years I'm not sure what point you are making.
I don't have a machine, the clinic at the hospital tests by finger prick. A&E tested by blood draw as they were testing the blood for other things at the same time, they took several vials, at no time did they say I was out of range. The tests since have all been over range.
I think the fingerprick test at the hospital follows the same method as the Coaguchek XS-machine. I am not 100 % sure though.
When I started Warfarin my GP took fingerprick tests the first year. Now I am only allowed to take the INR vein-test at a well-recognized lab (usually a hospital) which can forward the blood quickly for an answer. Now my Hematologist is responsible for me and not my GP.
I will absolutely find out about this or if there is someone else here who knows. We live in different countries but that should not be a problem.
I still do not know if you are LA, if so the values can differ up to 0,8 in INR (or even more), the day the INR is very high, between fingerprick and vein-tests.
In my locality all tests are finger prick tests, the only time blood is drawn is if they are testing for other things and check the Inr at the same time. It has been done this way since I was diagnosed and as I'm over range I'm not likely to be under coagulated but we're all just speculating, none of us know why it happened, the Doctors in the stroke unit don't know why it happened. When I get an answer I'll let you know.
When I presented with a DVT the first thing the consultant did was remove the HRT patch - and that was before blood tests confirmed APS. I wonder now if the hot flushes I experience were APS related and not menopausal. My mother either had a stroke or bleed on warfarin so I am on Xarelto. Awful headache today though. Flaring I think. I react badly to not having a good sleep.
I have read a number of articles over the years about hormone therapy. I started on HR therapy about 20 years maybe more when I first noticed I was skipping periods. I went on it specifically because I am a singer and at the time some of the medical doctors talked about the advantages of being on hormone therapy as a singer gets older. Then the scare about breast cancer cane and more and more doctors were not recommending HRT. However recently new articles have shown that not everybody needs to avoid HRT or fear getting breast cancer. So far my risk factors for most leases including hereditary factors are low or nonexistent. It's important to get the right hormone therapy for your situation. I am taking Premphase which is a combination of estrogen the first month and estrogen and progesterone the second month. I still have most of my high notes which is probably due to taking the hormone therapy but I also feel pretty well considering that I have MS and my GYN says he'll continue to give it to me if it's what I want. I'm worried if I still want to take it and he retires that the next GYN Want to go along with it. Hard to say how much longer I will be doing it anyway but at the moment I don't see any reason to come off of it. And because of Medicare if it's my first medication order in the new year I have to pay the deductible so the one month cost me like a small fortune but then when I order my MS medication, Copaxone, they will deduct The $360 deductible and then next order of premphase will only cost me something like 30 or $40 for three months or even less. This is really really a crazy system and not all that understandable to me.
So, my OB-GYN assured me that I could go on an estrogen free, bio-identical transdermal patch and that because the hormones are not metabolized by the liver, I am not at risk for stroke. She told me that I could also take a mild progesterone and that it would be helpful for my brain function.
I spoke with my stroke neurologist and he is supportive of these two types of HRTs for me for menopause.
My OB-GYN has read the studies and research on this specifically for her high risk stroke patients said I should have no issues as her other at risk patients do not as well.
Looking forward to fewer hot flashes and better relations with hubby. 😊
I am impressed that your doctors allow you to make some of these decisions. The male doctors whom I go to are totally disinterested and downright arrogant about their choices for me. They want to take me off coumadin, Menest but have not given me one valid reason for their decisions. Primary Care doc said he doesn't want to be the cause of me having another stroke. I've been taking Coumadin for almost 20 years and in the words of my retired Rheumatologist, "I got better." Once my Rheumatologist retired, the PC and the new Neurologist doctors began playing around with my medications. They have recently, abruptly taken me off coumadin. Now I am having difficult symptoms that are frightening. Migraine-type eadaches, severe leg cramps, rapid heart beat, crazy non-stop hiccups again and I feel just feel sick, rundown and fearful most of the time. I don't know why I am so scared. I stay up almost all night because once I lie down, my heart starts pounding so that it is difficult to sleep. I sit up, resting in bed, propped up on a couple of pillows. I can't lie down flat. I wish I had a doctor who would look at the last nearly 20 years, note that Raynaud's is better, hypertension is better, PT/INR levels are in the therapeutic range (2-3). Instead, I feel like they don't care if their decisions kill me or cause a massive stroke. I have written my complete history and given it to my daughter, just in case I do have a debilitating stroke because I WAS WELL until Q.1 and Q.2 took over and started playing fast and loose with my health program. There is NO doctor who reats people in my area for 'sticky-blood-syndrome. They don't know about it, and they sure are not interested to learn about it. Good luck.
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