Sticky Blood-Hughes Syndrome Support
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Any Safe(ish) Birth Control Out There? Who's on What?

Hi There! (DISCLAIMER - I will probably botch the medical spelling of the antigens etc). I haven't been on here for quite some time. I need to figure out how to do my email alerts again. My husband accidentally "unsubscribed" me. My daughter who found out she was LA positive had a successful pregnancy. They put her on aspirin only the last 2 months and she recently gave birth to a beautiful baby girl. I have finally found a doc nearby who is wonderful after testing positive several times for the anticardiolipins and glycoproteins. I don't think they ever did the LA, but it didn't really matter at that point I don't think. My daughter only tested positive ONE time for LA and has not gone back yet for second check. She was negative on the anticardiolipins and glycoproteins. Her OB is wanting her to consider getting back on birth control and she is weighing her options.

I was wondering if any of you young ladies who have Hughes and/or are LA positive are on birth control and what your docs thought was the safest ones to be on. My daughter's OB is leaning toward an IUD - one with lower estrogen. (of course I don't have the name right now). I'd love to hear any suggestions to pass along to my daughter. She wanted me to ask you all :D)

Thanks in advance!

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Many on here seem to go for this, my own daughter had it fitted.

mirena-us.com/

BTW it does not matter which of the aPL your daughter tested positive to. Many only test positive to one, some can do all three but the positivity can come and go. Once you have been diagnosed with the disease you have it and if ALL antibodies turn negative do not let ANYONE tell her she does not have it anymore.

Is she symptomatic at all? If not then she may get away with not having to take any medications although many like to take a baby aspirin daily. If and when she does start to get symptoms then she should see a specialist to seek out better treatment options.

Having just had a baby (Congrats BTW), make sure her Ferritin is around 100, B12 and Folate and Vit D is checked and of course get her thyroid properly checked - not just the TSH. I say this a lot but Spatone is a good liquid iron to take to jack up levels without any nasty side effects, especially after having surgery or a baby.

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Our daughter ( age 26.5) is showing a few symptoms- quite severe Raynauds and had teenage migraines. She’s tested negative one one initial test, but did not have the additional anti bodies tested.

My son’s ( 16 - diagnosed as well) pedi hematologist said he’s almost certain she has it.

Her gynecologist of course is not advocating any birth control other than the mirena coil for her and she seems to be doing fine with it.

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Kelly - I'm just so thankful that the mirena seems to be one that is "ok" so far!!!! By the way, can you give me the exact model of your home tester? I might start looking into them. I'm assuming my hematologist has to be on board and give me a script, is that correct? Where did you order from etc???

Thanks in advance!

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0k- 30 sec summary:

I was diagnosed in November 2016.

My GP handled my Coumadin briefly while we found a hematologist who understood APS. ( had LOTS of trouble here as you are finding out for yourself first hand.)

My GP wrote a prescription for a coagucheck XS by Roche. ( that’s the only one to get.)

I took this RX to Walgreens. My insurance didn’t cover it, firstly. Secondly, the pharmacist ( well, I think it was an assistant...) couldn’t find a supplier... the store was slammed busy...

my husband said- just give me the prescription. We can find a supplier since it’s not covered by insurance any way.

I found a medical supplier .

So, my GP AND my heme want me calling in and reporting my finger prick ( FP) values. I call in every Thursday morning at 10:00am.

I have standing orders at the lab hospital for Venous punctures ( VP), or vein draws, to double test against the finger prick value. I do this once at week minimum, twice a week if I’m out of range with INR.

If you have a lupus anti coagulant Antibody specifically , an addition to the aCL or B2GP1, your INR will be particularly labile, especially with regards to the discrepancy between the FP and VP values- the FP value being quite a lot higher. The higher you run your INR, the greater the discrepancy between the two values.

It’s critical to know the data up front and be extremely well trained. It’s important you know about reagents. ( pronounced ,”re-agents.”) The coagucheck xs strips use Dade Innovin. Your lab for VP should use the same reagent. Mine uses Neoplastin- which My hospital lab manager told me told is compatable- so apples to apples. I’m about to launch a deeper investigation into this.

Well. That was more than 30 seconds.

This is a very complicated issue- but the short answer is yes you can get a home checker. You MUST stay in extreme close contact with your physician with reporting values . You must know which anti bodies you are positive to. You must understand your INR range and the labile nature of the machine.

Find these things out. Then PM me for further questions.

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By the way- where are you- which state? City?

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Missouri

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Thank you Kelly. I'm so sorry for the late reply. I did read it but wanted to "study" it more before I replied and I've been swamped at work. I live in Missouri and see a heme at KU Med that's only 40 minutes from me. YAY! I do have a question for you. Did you mean that you do the self testing once weekly or the venous draws once weekly? I'm trying to get away from going in to get my blood drawn once I feel comfortable that I'm fairly stable. I'm hoping you meant FP weekly. I also have a standing order which is fabulous. I have only been tested so far for the B2GP1 and aCL. My daughter however is not positive for those so far but she IS positive for the lupus anti-coagulant. I guess I could have them check my Lupus Anticoagulant. I actually see my heme today. I had labs drawn Monday and my INR was 3.5. I'm not sure what he will think about that. He has really wanted to keep me between 2.5 and 3.0 until I start staying in range (which I have --- I've been between 2.8 and 3.0 the last two times). Anyway, today I'm going to try and convince him that I feel best above 3 and that I feel that 3 - 3.5 would be great. I'll have to be honest and tell him that I skipped a couple of days with my spinach in-take and I think that could be the cause of it being 3.5.

But yes - I'm a little confused at your explanation of how often you get your venous draws. The last two times they let me go for 3 weeks and said eventually they will go to 4 so actually that's why I wanted to get the Coagucheck machine - kinda for my peace of mind. I do understand the reasoning for needing to check the machines against each other, but did not know about the reagents. I will check with my lab and see what they use. I hope it's compatible because I'd really like to dive into this at some point.

If you are checking your INR weekly at the lab, may I ask why you still feel like you need to do the FP? I would think that would be sufficient. Maybe that's not what you meant! :D))))

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I check my FP value ( finger prick value) myself at home on my coagucheck xs machine once a day or every other day depending on how stable I am. This is by my doctors request. ( its common sense also, if you are fluctuating so quickly, right? On the line if needing to inject? If you are sick at the moment causing fluctuations, for example, on antibiotics, for example...)

I get vein value draws ( also standing orders at hospital) at least once a week. If I’m stable it about once a week. If there is a big fluctuation, or if my FP value is tight on line, or if I’m symptomatic if a low INR, I go to hospital for a vein draw.

The lab calls me within an hour, the results are also sent to my local GP and my hematologist who li about two hours away.

Once you are on warfarin, the Lupus Anticoagulant Antibody specifically cannot be rested for. It’s measured for a little differently .

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So to answer your question directly, I have a very big difference between my finger prick value and my venous puncture value, the the higher the INR, the greater the difference between the two values become. ( almost always). Usually this is indicative of being positive for the lupus Anticoagulant Antibody specifically. I’m known to be positive for the other two, and possibly now that third one, LA.

If you re read my response from a few days ago again- now maybe it will be clearer. This is how my doctors have requested I handle it.

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Kelly, I think that's my catch 22. I'm pretty sure they have never tested me for LA - just the ACL and Beta2GlycoProtein (again, probably butchering those - ha). However, my daughter was LA positive during her pregnancy but negative on the two I'm positive for. Crazy! I'm kinda assuming I'm LA positive, BUT too late now that I'm on Warfarin. I don't think my doc sees any reason to test me for the LA. He's still not quite on board with me home monitoring and I only go every 3 weeks for vein draw unless that one comes back weird and then I go back sooner - like the next week after they've adjusted my meds. I'm a little on the fence of testing daily anyway as I think it could just literally take over my emotions etc. My doc and I have settled on a range of between 3.0 and 3.5. I feel best closer to 3.5, but he adjusts my meds if it gets to 3.8 or too low like around 2.8. I seriously think I could use that home monitor to adjust my INR with my spinach. Does that sound crazy? My INR was 3.8 last time and it scared him but I didn't eat spinach 2 days the week prior and I'm convinced that did it. So my thought would be to have my doc give ME a second range that he would let me play with - with the home tester etc. So if I'm at 3.8, NOT to get too excited and maybe eat a little more spinach. Now if it's at 4 maybe start getting excited - but I see some people on here are between 4 - 4.5 range anyway.

I'm blabbing on and on.... sometimes I just need to think out loud. But I go back in 2 months for a check up. I'm trying to decided when I want to ask him about the home testing but I want all my ducks in a row first and know what to say. Plus I need to save up for it. The girls in his lab say that they never do finger pricks in the lab for their patients with LA (makes sense, but again, I'm not sure if I have it and I don't think I can test for it now). I'd rather just caliberate my vein stick with finger sticks and try to figure it out.... at some point when he is on board and all the stars align! HAAAA. The good news is I'm still so happy that I know what's been wrong with me all these years and I'm at least on warfarin and feeling better.

Thanks for listening - again!

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ps I had finally replied above to your answers, but it didn't make it to the right spot. I hope you saw that! :D)))))

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APsnotFAB - You are always such a big help! She hasn't re-tested yet (not time for that) and has had absolutely no symptoms of APS so far. We are hoping to just keep an eye on things. Even if she tests positive the second time, I'm not sure our hematologist will actually "diagnose" her with APS. I'm fine with that because of insurance reasons as I'm afraid that she would possibly become uninsurable with life insurance and such. BUT, we would definitely re-visit everything if she started being symptomatic. I'll write down all the test levels you gave us.

Thanks so much!

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The coil mentioned by Lynn, is an option chosen by many instead of barrier methods, some do very well with this. Are you in the UK and does your daughter have access to a Hughes Syndrome/APS Specialist? It is not advisable to take anything in the Oestrogen direction, all the more reason to have a specialist with the full knowledge not just half of it. Let us know where you are located, as we have a whole list of specialists on here across the UK, and on the charity website, attached to this forum, international doctors also. MaryF

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Hi Mary!

We are in the U.S. I have found a wonderful Hematologist that knows a lot about APS. He is 45 minutes from my house but literally 3 minutes from my daughter's home!!!! The one she saw while pregnant rolled his eyes at us and laughed - acting like we were nuts! I was so angry. I told him that it was clear that he was one of the U.S. hematologists that have no clue about APS. Oh boy!!! HA! Anyway, she will go back to my doc here pretty soon and get the second testing done. I have been back on Warfarin for 2 months now and my hip pain has decreased drastically!!! I feel so much better - just wish my ears would stop ringing, but so far they are the same most days. It's pretty bad ;d( Praying my daughter never has major problems IF she actually has APS (which I'm afraid she does)

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I was on a progestogen only pill (POP) for many years safely but was found to have fibroid s so switched to the Mirena coil.

Stats in for 5 years and no remembering to take tablets.

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Thank you! I'm thinking the Mirena is what her doc suggested. I'm so happy!

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Hi

I have had the mirena coil for 3 years now. I have lupus and APS. I haven’t had any problems with it.

L x

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Thank you so much! I love this site!!!

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I take 5mg daily of Norethindrone for birth control. My docs did not want to go the IUD route. They felt the less devices in me the better.

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I can understand some doc's views on this for sure!!! Thank you!

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