Following a miscarriage in May, I began developing silent migraines (long time migraine sufferer), splinter hemorrhages, fainting spells, transient numbness in my arms and face, then had a stroke in my eye at the end of August that left me with some visual loss in that eye. Following this there have been TIAs in my eyes. Eventually after navigating the US' healthcare system and finding health insurance I could afford I was able to get the testing done that led to a diagnosis as to what's going on. My primary sent me to a Hematologist and those results came back in right before thanksgiving, My anticardiolipin antibodies are HIGH. This week at my follow up with my primary ordered testing to rule out Lupus and other autoimmune issues and as of now it looks like I have Primary APS. It has been a long and often scary road to this point. Right now it looks like I'm on long term anticoagulation (Warfarin currently with a target INR of 2.5-3.0) but my Dr. said he was open to other thoughts on therapy. I know in the UK other therapies are used, what about in the US? Anyone on here that can speak on this topic?
Recently Diagnoised with Primary Anti... - Hughes Syndrome A...
Recently Diagnoised with Primary Antiphospholipid Antibody Syndrome in the US, looking for others.
Hi there and welcome, lots on here from all over the UK and also the USA, and other places around the world. Plenty on here have a similar history, and also many use Warfarin and other various anticoagulation, so you are in the right place. Also many have tracked down the right physicians in their particular area. Hoping that you continue to find the charity and forum useful. Our actual charity webpage has lots of useful information also: hughes-syndrome.org/ MaryF x
Mary, Thank you for your reply, I'm very familiar with the charity webpage, in fact weeks before I got my official diagnosis I stumbled across the page and wept after reading through the various symptoms because finally it FIT, especially the eye symptoms tab, down to the dots and stars...which I still can't get an answer as to what causes that! I get that one frequently, and not relating to migraines/aura. Something actually sounded like what I was going through. After weeks of nothing seeming to add up or make sense, APS did. My Ophthalmologist pretty much pegged it from my first appointment when he diagnosed the eye stroke but still I had to wait until I gained the health insurance before I was able to get the expensive panel ran to get the official diagnosis. So now comes the learning to live with this, and my Dr is treating this, along with guidance from my hematologist.
Hi there and welcome.
As my colleague Mary has said there are many folk on here from the UK & USA.
You may find that you need to slowly push your INR up towards 3.5 - 4.0 and see at what level it reduces your symptoms to a manageable level; 2.5 - 3.0 is probably a little low.
Some of us, me included, have moved from Warfarin to Fragmin (Low molecular weight Heparin), which has to be self injected but which gives a more consistent anticoagulation and is not affected by what you eat and drink. It works in a different way to Warfarin and does not need INR testing as the INR is not affected by Heparin.
Keep in touch with us and let us know how things go for you.
Best wishes.
Dave xx
Dave,
Thanks! I had read that higher INRs may be needed and have mentioned this to my Dr. as well as the addition of aspirin with Warfarin. We are both hesitant because even at 3.0 and having breakthrough clotting But having bleeding from my gums/sinuses (I think) overnight and upon waking with blood in my mouth so trying to figure this all out. We have also discussed heparin use during pregnancy and may go that route if we can't get my INR to regulate. Though right now they seem stable. I'm sure eventually all this will become routine and not be so anxiety inducing! But right now it's like I stepped into someone else's life and am having to learn how to live it.
Take care!
Hi. I certainly find Heparin suits me better than Warfarin. Keep in touch. Dave xx
Was there much of a transition over to Heparin?
No, you start Heparin and stop Warfarin the same day; Heparin works immediately, pretty well.
Dave x
Thanks!
I brought up Plaquenil at my last appointment in relation to it's ability to possibly lower Anticardiolipin antibodies. I will have to look into the Gluten link thank you for that info. I will also mention the Vitamin D and probiotics to my doctor. Thank you for the information!
I have been taking Plaquenil in addition to Aspirin (4/ 80mg day as a blood thinner..grateful I don't have to take anything stronger) for 4 years and so far my symptoms have lifted and my caridolipid number is staying below 10
Luisa, This is good to know, prior to starting Plaquenil, what were your cardiolipin numbers? Mine are in the high range, though I do not know the exact number at the moment, Hematologist just said they were high and that we would need to retest in 3 months to confirm to meet the testing standards.
when diagnosed #28....now fluctuate from #9--#12....Fortunately I was diagnosed before I experienced a serious medical problem....I was referred to Dr. Gaito, a Rheumatologist, because she is in the forefront of Lyme DIsease diagnosis and treatment....for reasons too complex to explain here...MD's(ie specialize in an infectious diseases like Lyme) in New York State who belong to the Infectious Disease medical society are forbidden (yes, they will get in trouble with NYS Agency who oversees MDs;and the IDS)......I had been feeling sick and getting sicker....and Lyme Antibody tests had been +....so after many rounds of antibiotics....I decided t trek to New Jersey to see Dr. Gaito....she tested with a mosre comprehensive test...and found I was "free from all tick borne illnesses"...and because she is also in the forefront of educating the medical profession and the public ....about Autoimmune disorders (testing is frequently overlooked as it was in my case ..for years) she tested me for Autoimmune disorders .....ie found APS; and also Unspecified Mixed Connective Disorder..
after a few weeks of taking Aspirin and Plaquenil...I felt "great"...I consider Iwas very very lucky to have ended up in her office........My grandmother had a stroke
at my age 61, at time of DX, ....deteriorated and died....
Wow, That sounds like a lot! I am currently in a holding pattern between the two tests. Fir st test revealed a high level of anticardiolipin antibodies. Hematologist scheduled the second test for the end of Feb, to meet the labratory standards of testing. I know there's some research coming out of a nearby hospital (Duke) that only requires the tests be 6 weeks apart. I'm just curious how long it takes Plaquenil to start lowering the antibody levels and if that's something I should avoid doing until after the testing is completed. My knees and fingers, and energy level, I think would benefit from it. By the evening time Those joints feel like they are popping apart and I have very little energy left to curl up and lay my head in my husbands lap most evenings. I just keep telling myself...It gets better, It has to get better.
Hi,I'm here in West Virginis. I was diagnosed in 2001 after 6 monthe of scary mini-strokes and TIAs. I have been on warfarin ever since. I can't say that going on warfarin erased allmy symptoms immediately; the TIAs stopped but the migraines contined,albeit less frequently, for another few years.
H
The secret to warfarin is consistency, and taking this drug is more like an art. Same amount of leafy greens a day, ( which means you need to memorize their relative Vitamin K content,) same activity levels per day, also memorize the foods that counteract warfarin, ( ginger, garlic, carrots, alcohol,) and try to also enjest roughly the same amount of those also each day. You will become versed in what me hematologist calls " voo doo blood chemistry. ( He does not approve of voo doo blood chemistry.)
Recently I had surgery and I bridged from warfarin to the shorter lived injectibles lovanox. Yes, you gave to give yourself a shot. But boy! I totally enjoyed my vacation from the warfarin diet!
In case you don't know this yet, our blood utilizes many domino- falling event/pathways (called " clotting cascades") to initiate blood clots. Warfarin acts on the cascade that utilizes Vitamin K. Other blood thinners act on other cascade components, most of which are accurately dosed by body weight and are thus easier to keep in range.
I went off gluten in 2006 and my health improved. Dramatically. My cardiolipin IGG dropped from high positive to normal, my RBC counts went from anemic to normal for the first time since I was 4 years old, and the migraines, which had become less frequent through the years, stopped.
Good luck.
Warfarin has greatly decreased my symptoms but like you not completely stopped them. I haven't passed out a single time since starting Warfarin and was passing out frequently before, even on 325mg of Aspirin. It has also greatly decreased the Retinal TIAs but not completely stopping them. I will be discussing more with my Dr. the thoughts of higher INR range, addition of Aspirin, or the switch to Heparin over the next few weeks. I can definitely tell when my INR starts to fall, the symptoms start to come back pretty quick. I'm assuming with high levels of antibodies it can be hard to get INRs to regulate?
No, high levels of antibodies does not necessarily correlate to ease of regulating INR. You might require a higher INR number to be therapeutic, but regulating INR is a matter of limiting Vitamin K absorption. again, other meds work on other pathways and an experienced doc should be able to work with you to find the best therapy for you.
Thanks, I'm pretty vigilant about my Vitamin K intake and consistent with my activity levels, and all other things that would affect my INR. I do think a slightly higher INR would benefit me. when it was slightly higher than 3 I felt close to normal again. this week when it dipped back to 2.9 I've felt more fatigue, tingling in my skin, joints have hurt a good bit more, and I am experiencing more migraine auras, splinter hemorrhages, and a bit of brain fog.
Gina, how high was your cardiolipin levels prior to going gluten free? How long did it take for them to start dropping? Thanks for the information and yes I'm familiar. Good luck to you as well!
Rally the blood work from those years has been thrown away, but to the best of my memory, the IGG was " very high.". The IGM and IGA were " moderately high.". But I do not recall exact numbers. And these numbers all fell to normal within 4-6 months. I went GF in Aug or Sept , and the blood work was run in Feb(?) but the feeling of renewed energy and more mental clarity occurred within days.
On some Celiac site I have read that one's age has a lot to do with how quickly one responds to a GF diet.The older one is, the more the GI tract is the damaged and the longer it takes to reap the benefit of going GF. I went GF at age 49.
That is pretty phenomenal! Did you have a known Gluten allergy/Geliacs or did you just go GF becase of APS? I'm willing to give it a go if it means less of a chace of clots. My clotting issues seem to be all microclots so far. But they are multiples and keep happening, I do not want to risk anymore vision loss so am pretty much willing to try (within reason and safely) anything I can to help myself in this.
Before I went GF I had regressed to taking 2 naps a day and sleeping 12 - 14 hours a night. Again. This is a sign of autoimmune issues in me. I confided in a musician friend of mine who immediately said I needed to try the Adkins Diet, that my carb intake was too high. (She had just gone on the Adkins Diet, so, of course, she thought everyone should.) I didn't tell her this at the time, but I thought she was nuts. But she kept nagging. And nagging. And nagging. Finally I talked to my GP. "Actually," she said, "your friend might be right. Why don't you give it a try and we'll order and extra INR for you this week."
So, I went GF one Monday morning. (no toast with breakfast -- just eggs with sauted spinach.) Also lunch was no carbs -- luncheon meat and a salad. That afternoon I: A, did not nap, but B, went hiking with my daughter the day before she was flying back to college. We hiked 3 miles and I wanted to go further, but she insisted on turning back because I had been feeling bad. That night I stayed up till 11PM. No naps.
Next day I was up early to drive her to the airport. I had so much energy when I came home I cleaned the whole house, then loaded up my bike and drove to Kanawha State Forest where I pedaled 5 miles to the top of 4 Mile Mtn and back (elevation gain of 1000'.) That night I again stayed up till 10. Next morning I woke up, feeling wonderful and said to myself, "This CANT be the Adkins Diet. Something else is going on." I got a book down from the shelf: "The Autoimmune Connection" which had been gifted to me by the author as I was the anonymous interviewee for APLS. I read it cover to cover (without falling asleep), closed the book and said to my dog, "It must be Celiac. Its the only explanation." I phoned my GP. She had left orders to be fetched from treatment room if I called. I told her how the Adkins Diet was going and asked "Could I have Celiac?" "Of course you have Celiac!" she responded. "You have all the symptoms!" "Then why am I diagnosing myself?" "WE can't treat it, so we never think of it!"
Since then, a catch-up call made to my old pediatrician revealed that my physician Father and his partner (said pediatrician) suspected Celiac in me when I became very anemic at age 4. There were no confirmatory tests then and my Mom angerly accused them of trying to make her life miserable with this impossible diagnosis. "No one can be allergic to wheat! That's impossible!" My parents separated shortly thereafter. I was only 5 by then, and very confused because Mom told me that "Your Father wants you to never, ever, ever eat a cream horn from Nu Era Bakery again!" Even at age 5 that statement as a reason for their separation and subsequent divorce made no sense to me, which is why I remembered it.
Hows that for a soap opera story?
Interesting! I actually should have results back from a Celiacs biopsy test shortly so I'll know if I have an issue there or not. It is amazing though that a lot of people that do not have Celiacs have issues with gluten.
Actually the more one reads about gluten the more one can come to suspect that gluten may be the root of a huge percentage of chronic conditions!
It is definitely compelling. I've emailed the thoughts to my doctor! I'd love to think an adjustment like that is all that would be needed to get the antibody levels down to a lower level.
Hello....may I recommend you look at the Hospital For Special Surgery (NYC-NYU Langone Medical Center..the Rheumatology Department is in the HSS) website......They are doing research on APS in addition to seeing patients..I believe they are in the forefront of information and treatment.....you can contact them for referrals etc.......even if you are not located in the NYC area.......
In my experience Rheumatologists are the MD's to see......APS is blood related disorder.....but my Rheumatologist always keeps in mind I could develop other autoimmune disorders as well..
good luck.......Mayo Hospital in the midwest is also an excellent place to find info
Thank you I will check into those and will also pass this info along to my doctor. We are in the Southern part of the US, Duke University is the biggest research school in our area (about 3 hours away from me) the majority of the research on APS from there seems to be more Genetic based or more aimed at Children or severe cases at the moment, but at least its something.
John Hopkins Medical School and Center is closer to you autoimmune.pathology.jhmi.edu
Thanks!
I went to Duke for my hip replacement as internet sleuthing indicated they are familiar with APLS. But the hematologist I was assigned to down there doesn't think I have APLS because all the positive blood work has been thrown away. All I have is the stuff since going GF which is all negative. My surgery went well, but I am skeptical of his wish to De-diagnose me. Unless he can come up with a theory as to why I had all those strokes and why their cessation coincided with warfarin therapy, I have no intention of heeding his theories!
Glad your surgery went well. I was actually talking to my Dr. about some of the APS research coming out of Duke at my last appointment. I'm about 3 hours from there. Warfarin has made a significant impact on my symptoms. I still think there's a bit more of improvement to be made but, definitely know its doing some good. I wouldn't heed either!
Thank you!
The links recommended on our charity website are to this organization in USA: americanaps.org/ another useful site is this one: apsaction.org/
Mary F x
Thank you so much for these links as well!
oooh could you maybe put a link to that please? sounds ominous x
Hi there, I'm sorry to hear you have APS but glad you found information , the main website & forums so you can look into any questions you have & to not feel so alone.
Many of us had felt very alone with this until we found these forums to talk to others.
It helps a lot just to know we are all experiencing similar symptoms & are going through very similar experiences.
Good luck with with your doctor, I hope any info' you get that you can pass on will get you the proper care & medication needed to help you, even though we are on medication we do still have symptoms but hopefully they are keeping clots at bay....which is the main reason for them, my inr is often unstable... has been from 1.8 to 8.0 before now!!! no real reason except maybe slight change of diet or mood?! I hope to hear more about you, take care, Sue x
Sue, thanks for the encouragement. It does feel lonely at times and has helped to see there are others that have experienced the oddities of APS. When all this started my anxiety level went through the roof and still hasn't recovered. I will get there, it's just taking me longer than I'd like for it to. My doctor is pretty awesome and am very grateful for him. He was my childhood doctor so when I started getting 'sick' I started going back to him and he figured out pretty quickly what was wrong. It just took me getting insurance to get the testing to figure out which clotting disorder it was. My INR had been stubborn at times. Was slow to budge and then seemed not to want to stay up. But it's been around 3 for the last 3 weeks and am hoping it stays there. I had a retinal TIA though last week and my INR was 2.9, I'm not sure those will ever stop being scary.
No they wont stop being scary 
I know I have had a few TIAs since I was diagnosed 12 years ago....I've had a couple recently due to stress & low inr......it's good you have a good doctor, good luck with keeping the inr where you want it, I like mine inbetween 3 & 4 if it drops below 3.0 I feel a huge difference & also if it goes above 4 I usually end up with bladder & kidney infections!! you just cant win!! All the best x
Ahhh balancing acts! I have tingling skin this morning, and am assuming its sticky blood at work. lol Wonder what causes UTIs above 4? I'm still amazed that since starting Warfarin I haven't passed out once, really glad though, that was getting old! Though apparently it was happening enough I had perfected how to fall gracefully and as to not hurt myself. I think that might stem from an earlier period of time in my life though where I had passing out spells when I was a teenager. Hopefully Its a thing of the past.
Hi. Thanks for your posts. I just found this website on Friday and am wondering if my odd symptoms might be APS. Seeing your pathway and reading all the information people have given you has been very helpful. I live in the US Northeast and it really helps knowing there are so many people here on the east coast trying to find answers or helping others to find answers. Keep your spirits up through all of this as best you can! Sending you positive thoughts! Robin
Robin, thanks for your encouraging words and glad my post helped you. If you ever want to talk feel free to pm me. It has helped me tons finding others to talk to that have gone through or that are going through similar things. These last few months have been lonely and scary. Don't get me wrong my husband and loved ones have been amazingly supportive but when you have something like this its helps finding others that can relate. There's also an amazing support group on Facebook if you do turn out to be APS+ I can send you a link, just let me know. I found them this weekend and it already feels not so lonely anymore. Not to mention the amazing people here have made me feel welcome comfortable. You hang in there as well and know you have support as it is needed! -Nicole
I live in Ga. I have only taken Coumadin and hesitate to try anything else only because I know that Coumadin is effective and because if I am injured or develop a bleed there are tested ways to reverse its effects. I have to keep my INR around 3-3.5 to alleviate symptoms. I've fortunately only had problems with bleeding a couple of times. I had a ruptured ovarian cyst and then bled in my abdomen after pulling a muscle of all things. There are other options, but like I said, I just worry about the ability to reverse the anticoagulation with other drugs.
Yes, as for anticouagulants as long as I do not become Coumadin/warfarin resistant I will stay on that. We had a time getting my INR up to the 2.5-3 range. The newer ones make me very nervous with the limited reversals. I have been talking to my Dr. about adding Plaquenil. Now my Ophthalmologist is recommending that he raise my INR to 3-3.5 since I'm still having Retinal TIAs and he is recommending my primary start me on Plaquenil in addition to Coumadin.
Primary APS here also, in the US. I know that this site is very, knowledgeable. Lots of wonderful members and staff! My advice, gain as much knowledge about Hughes Syndrome that you can. Problematic with memory loss and brain fog, but worth it!
Thank you! I've come a long ways in my journey since posting this. I've found a phenomenal Hematologist who knows how to deal with APS, due to insurance issues changed Primary Care Physicians but that has turned into a blessing in disguise! He has been amazing! My new Primary is knowledgeable about APS and is working closely with my Hematologist to make sure I am getting the proper care. I've gained a lot of knowledge through here and other sources. I've learned that keeping my INR in range not only keeps the clotting events, aches and pains at bay, it also lessens the memory issues and the brain fog. I have also began Plaquenil and my new doctor is continuing me on that treatment and supports that treatment approach. I will also be adding a Rheumatologist to my team in March.
Would you mind sharing this with me as well? I am newly diagnosed just three days ago, and am supposed to see a specialist this week. Thx. 
I have APS and am on Xarelto, low dose aspirin, and plaquenil. I've recently began having intense burning in my toes. I was tested for gout and it's negative. Going to see a new neurologist to try to get answers and to help manage my chronic migraine. I see there are questions regarding cardiolipin levels. Mine are:
PHOSPHATIDYLSERINE AB IGG>100 H
BETA-2-GLYCOPROTEIN IGG 93H
Cardiolipin Ab IgM 51 H
Cardiolipin Ab IgG39H
MITOCHONDRIAL (M2) ANTIBODY24.4 H
White Blood Cell Count2.7L
These results are after being on warfarin for 1.5 years and then Xarelto for about 6 months. Should these numbers be coming down?
My understanding is, the antibody levels will fluctuate over time. Sometimes they will be low, other times they will be high, but they will more than likely always be present. While I do not recall my exact number I do know I have high levels of anticardiolipin antibodies.My Hematologist would not place me on Xarelto because he said there was a lack of studies on its efficiency in treating APS, plus with the lack of easy reversal I do not feel comfortable being on it. I started Plaquenil at the beginning of January at the recommendation of my Ophthalmologist, because I continued to have transient clotting events in my eyes even on Warfarin. So my old PCP started me on Plaquenil and my new PCP has continued me on that treatment as well.
I went back and forth with my PCP on the Xarelto. I told him all the info I read about it and that it was not approved for APS. He told me he didn't know where I was getting my info but it was wrong. He said he was treating my clot not my APS which is stupid because the APS caused my clot. I finally went to a rheum and she was not happy about the medication. I went to Stanford, I'm in the states, for a 3rd opinion and he agreed that I should not be on Xarelto at all and I need to go back on warfarin. I was on it previous to Xarelto but level fluctuated and I was always below 2. I now have a new PCP and will be seeing a new rheum and will get her input before changing back. I know I need to and should now because I've been lowered on the Xarelto and according to Stanford, I'm not being protected right now. I seriously wonder if my original PCP and hematologist get a kickback from the drug companies for pushing xarelto and other medications.
Kathryn, It is quite possible that some doctors do get kickbacks for promoting the newer drugs. I am very fortunate that none of my doctors partake in that part of medicine. What was your dosage of Warfarin? My INR is always fluctuating but we are usually able to keep me in range by increasing/decreasing my doseage weekly depending on what my INR is. My doctors and I both believe in frequent testing and I go weekly to the lab for testing. Currently I am on 15mg of Warfarin all days, except Sundays I take 12.5mg. I will find out tomorrow if that dosage was about to raise my INR from 2.1 back to my target range of 2.5-3.5. We try to keep me as close to 3 as possible because much lower than that I start having clotting events. Another one of the reasons I do not thing Xarelto would benefit me is because it is geared for a different type of clotting than what I have. All of my clotting events have been micro-clots, and the one that caused damage Is in my Retina. I have had several transient clotting events in my eyes as well. This continued to happen on occasion even after starting Warfarin, so my Ophthalmologist recommended my old PCP add Plaquenil.
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