Find a cure for APS

my first time posting, please excuse mistakes. my first stroke must have been minor, after a weekend in hospital I felt fine and didn't see any reason to stay longer, first mistake, I was put on Warfarin but complained of dietary restrictions so GP moved me to Xeralto, second mistake, APS took my peripheral vision on my right side, then 10 day in hospital, as they cleared the clot in my brain. now learning to drive again, rehab at St. Davids are GREAT. I only drive where I know roads, signs etc.. simply cannot process a new area quick enough to drive in unfamiliar roads . damage to my brain is done but I can work around the driving limitations. IF APS can be cured at least then I can avoid other damage to the brain I have left. keep my INR 2.5-3.5 if we can cure APS then no need for Warfarin or INR testing any research being done?

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  • From your lips to God's ears... they just recd a grant in March to search into this, Dr Anisur Rahman is included. Someone who remembers the name of the grant please post as I forgotšŸ˜³Welcome to the forum. Sorry you experienced all that, I know the feeling! Where are you located and have they diagnosed you with Hughes?

  • during second stroke the hematologist told me about APS and xeralto had not tested. I'm in Austin TX

  • He told you or diagnosed you with Hughes/APS?

  • not exactly sure ti Dr. told me or if he did. I am sure he told me Xarelto had not been tested with my blood condition, APS.

  • I'm in Kerrville!

  • It was ABZENA in partnership with UCL.

    abzena.com/news/abzena-plc-...

  • The technical details are way over my head but this looks really exciting. If the Domain I blocks the binding of aPL to beta-2-GPI then does that mean that APS no longer has the power to cause significant damage? In otherwords, short of a complete cure, would it mean that APS would become relatively benign? Sounds too good to hope for but there does seem to be major breakthroughs with a whole range of autoimunne conditions atm, including for example reversing fibrosis in scleroderma.

    Thanks for posting anyways. With my tests for APS next week this has given me a little bit more hope and lessened the fear a bit.

    Cheers

  • Limitations would mean those that don't have antibodies for B2GP1 and also those that do not have positive antibodies full stop as we all know that many people have this syndrome that don't have the antibodies. Also its also emerging that people clot when antibodies disappear!

    Im sure research will be looking at all these anomalies.

  • Thanks ApsnotFab. I really appreciate the time that you guys take to answer questions.

    I might have got this completely wrong and probably have. But I dont think the patients would need to have anti-bodies for B2GP1. They would just have to have B2GP1, which I think everyone has? As the Domain 1 stops all APLs binding to the B2GP1.

    But then I guess there is the question of what happens in case of ppl with no APLs? What I did wonder was whether those with Hughes apparently without APLs might simply have Hughes without one of the three identified APLs? Im wondering this because that is what is suspected in the case of the 5% of ppl with ssystemic scleroderma without tseting positive for any scleroderma anti-bodies.

    As I say, I might and probbaly have got the whole thing mixed up. My brain seems to be on holiday at the moment, but unfortunately didnt take the anxiety and depression with it.

    Thanks again and for all the help that you provide on this website. Its really appreciated.

    best wishes

    Charlie

  • Thanks for the complement we appreciate it. I agree, the research does seem to be concentrating on those that have antibodies but a recent return tweet from the researchers indicate that they have this in hand and are looking at those without antibodies but still have the disease too.

  • Thanks. It just dawned on me that if it turns out that the proposed treatment works for those with no identified APS anti-bodies, and the causal mechanism in those with one of the three identified anti-bodies is indicated to be the prevention of APLs binding to B2GP1, then this in itself might be indirect evidence of a so far unidentified Hughes implicated antbody or bodies?

    Anyways, I know that Im spedning too much time thinking about APS atm, as hands and legs changing colour all the time keeps it at forefront of my mind. So will try and forget about for while and get back to what I should be doing. Please ban me from site if Im posting here again in te next hour! :)

    thanks again

    take care

  • šŸ˜Š

  • I reclotted on April 1 and my B2GP1 as well as aCL auto antibodies were back to sero negative. Hematologist had drawn last on March 12 -

    If you remember, APSnotFab, I'm quite a low positive tester for those.

    He did not, however draw for the "additional antibodies " I had posted earlier in April about, that my son Grant and I also test positive for. ( anti- phosphatidylserine/prothrombin IgG)

    A thorough rheumatologist with a working knowledge of APS/ Hughes in the USA will run an advanced prognostic blood panel called the AVISE panel. It can check for more details in Lupus, and APS. ( like these additional antibodies.)

    My son was checked by his pedi hematologist and flagged for this one, as well as phosphatidylethanolamine AB ( IGM)

    I have to wonder to what extent these "additional" antibodies play in clttingbin APS patients. They are in my blood stream, and in my sons, and I'm quite a clotter.

    Lynn, you have the stage. Not now, you are a busy lady. Please make a note of this and tuck it away- I do feel it is important data somehow. Not sure which slot to file it under!

  • Ok will do. šŸ˜‰ KellyInTexas This I assume is the test you are talking about:

    exagen.com/products/avise-p...

    You may also find this interesting reading:

    aruplab.com/Research

    And as you can see here, people like you and me who do have positive tests at some point but are quite often seronegative, or totally seronegative but clot, do have the option of that and other tests mentioned here to try and help with their diagnosis:

    emedicine.medscape.com/arti...

    and more info here:

    ncbi.nlm.nih.gov/pubmed/235...

  • And here is a link to where you can get the APS/PT aPL test done:

    esoterix.com/test-menu/anti...

    And here:

    mayomedicallaboratories.com...

  • Thank you disloyalorderšŸ™ƒ

  • ken42 Welcome. Im unclear as to if you have had a firm diagnosis of antiphospholipid Syndrome, do you have it? If you do then Rivaroxaban is actually the only DOAC thats approved for this disease but only in limited patients, they must only have had venus clots and need an INR 2-3. As you had a stroke you should NOT have been put on that drug.

    You don't say if you are still taking that drug or have been switched back to warfarin? You also don't say how long ago you had your stroke and it affected your peripheral vision. I also had mine affected with my stroke and was told it would not return. I forced myself to do as many online visual field tests as I could do to make my brain remap and I did them as often as I could. After 2 months my consultant was stunned to find mine had returned to normal. Don't give up with yours as you can do the same.

    I lost my driving licence for a year and then had to pass all the DVLA tests again, which I did with 100%. You can live with this disease as hard as it is. Don't give up. One day hopefully we will find a cure but in the meantime we have to work to make the best of our individual issues.

  • could you give me the link the online peripheral tests/exercises?

  • Ken - You need to answer my question below about if you have the disease that this forum represents? Thank you

  • ok, thanks, in the hospital with my second stroke , one year ago, I was told I have APS the hematologist that came in told me Xarelto had not tested the blood thinner with my blood condition. any other questions?

  • Thank you for clarifying that. It's important for us to know so we are not talking at cross purposes or giving advice when it's not needed.

  • second stroke was one year ago now warfarin to keep INR between 2.5-3.5

  • Hi Ken42,

    I now wonder if you have got a Specialist of HS/APS who you can talk to and who also understands our illness and that we need to be anticoagulated when having had a stroke on a rather high iNR-level. I think you should always be over 3.0 or around 3.5 - 4.0. Also ask to have Heparin-shots to take when the INR is too low.

    Best wishes from Kerstin in Stockholm

  • Xarelto has been tested with APS patients and at standard dose found to be equivalent to warfarin at 2-3. It hasn't been tested on stroke patients but I can see no reason to think our blood would give any different results given the way the trials were done. Some people just get on better with different drugs, you need to "find what is right for you" (I've changed blood pressure drugs a lot after that advice) - BUT that is awfully difficult when the only way of determining what is right for you is "have you had another stroke".

    Some specialists will say that all APS+stroke should have warfarin at 3-4, but there is no actual evidence for that, in fact all the clinical trials that have been done show 2-3 is just as good (apart from APASS which has been discredited but showed aspirin was better...). There is a lot of debate, very little research/evidence, and the experts internationally do not agree, nor do the various guidelines (UK haematology says 2-3, which is what I am on having had APS+stroke).

    However, all that is not awfully relevant since (if I understand your post correctly) you had _another_ stroke whilst on anti-coagulation. In that case _every_ recommendation and guideline I have seen says you should now be on warfarin at 3-4 (or something equivalent, fragmin/clexane etc.), i.e. a 3.5 target.

  • Thanks, monitor INR weekly taking 5mg of warfarin for 5 days 6 mg on Mon&Wed , test INR Monday afternoon for total 37mg per week will keep my INR at 3.0 , if NOTHING changes in my diet , small change in diet,tomato soup instead of beef stew can move INR .5. Warfarin hard to manage. after each INR test I consult with coag nurse if I need to adjust dosage

  • Do you have a Specialist of HS/APS who is specialized in autoimmun illnesses?

    Have you tested positive to all the 3 antibodies twice with 12 weeks apart and got a diagnose?

    As APsnotFab also said, as you have had a stroke, you should be on the higher level of anticoagulation. The INR should be kept over at least 3.5. I selftest every second day and keep it around an INR of 4.0.

    Especially if you still have some neurolgical symptoms when on an INR of 3.0 you should tell your Specialist about that. I wonder if you have a Specialist? In that case (if you do not have a Specialist) try to change as that is so very important for your life.

    Kerstin

  • thanks, sorry no specialist in HS/APS . how do i find one in Austin TX?

  • Ken, its very difficult. To find hematologist who have working knowledge of APS. As far as APS specialists, we don't have them.

    I'm in Kerrville and I have to go to San Antonio. Please clarify: have you had the anti bodies for APS confirmed? If so, with your stroke, you need an INR of 3.5 minimum.

    I use Dr Joseph Holahan in San Antonio. I can ask his nurse Monday who he recommends in Austin.

  • Kelly, thanks, with these questions regarding if I have APS , I went back through the discharge from the two strokes. the first I only stayed in the hospital for a weekend,dumb, actually no no one told me I had had a stroke. but the discharge said they suspect APS, I had to quiz my GP why I spent the weekend in the hospital, they would say I has am episode or event but they avoided using the term "stroke". the second time actually started with us wanting to take a vacation but I was complaining that something was "not right". so my GP sent me to an optomoolgist. he showed a test where I where I had no peripheral on the right. he suggested that I was having a stroke at that moment and I should go to nearest emergency hospital and tell them I was having a stroke and to check in. spent 10 days at Seton. that's where they confirmed APS , had to have the Dr. write it out because we had no F...ing idea what it meant. The cardiologist explained I had clots on my heart valve and we needed to clear them, if one broke free I could have another stroke or .... fortunately the 6 month followup showed it was clear. now trying to set up follow up with hematologist to make sure he is familiar he is with APS issues he was the person who said Xarlto had not been tested with APS conditition, at least at that time:). sorry for going so long

  • Ok. First of all there is a study on rivaroxaban and APS. It is a new study released in 2016. It is called the RAPS trial published out of a England in the Lancet.

    Our administrators of this site have convieniently pinned it for you in pinned posts on this site at the right if you are on a laptop or scroll all the way to bottom of an iPhone.

    Or you can google 2016 RAPS trial in the lancet - hematologist are Dr Beverly Hunt , Dr Hannah Cohen , and I think a few others.

    Mainly what YOU need to know is that you personally DO NOT MEET THE CRITERIA for xeralto/ Rivaroxaban because you have had arterial involvement/ have had a stroke. This means you need an INR of " at least 3.5 if not a little higher" I would expect, not being a physician, or knowing the ins and outs of your medical situation.

    If you need only an INR of 3 or less, and have had only vascular involvement ( no arterial involvement) I believe Xeralto has been approved for APS patients . (This is quite a break through!)

    Unfortunately this does not sound like you...

    I encourage you to find this pinned post and print it out and take it to both your hematologist and neurologist. These two physicians must work in random to co caption your ship.

    I need to ask you again, you are going to get your hands on the three tests that were run to confirm your diagnosis of APS. The types of antibodies you have and how high the titers are are somewhat important. It's also just one of those things moving forward that you have to have to solidify the diagnosis .

    They are as follows:

    1. aCL ( anti cardio lipin)

    2. Beta 2 glycoprotein 1

    3. Lupus anticoagulant. ( confusing name. Has nothing to do with lupus and has nothing to do with anticoagulant...)

    So see if you see a test like that. If not, ask about it. I would ask your hematologist how many APS/ Hughes patients he has managed in his career, and how comfortable he is handeling such a disease, or if he knows if any of his colleagues might be better suited to handle an APS diagnosis, since it is pretty specific.

    Did you want me to ask for you, still, or would you rather feel that out for yourself first?

  • I'm sorry I don't under stand what it means to be pinned for this study

  • Pinned post means "attached"

    Literally a reference to the days of s literal cork board in an office when you could use a real push pin or thumb tack and "thumb tack" a note on a cork board:)

    You are welcome to call my cell.

    Our part of the hill county 's area code is 830.

    (830) 459-2004

    I just got out of the hospital- I was in a couple of days earlier this week with a new clot. One in April, and a new one in may. Back to back...

    steroids this time IV. I just got off phone with Holahan nurse. ( Bella is her name.) 1.6 INR this morning. Warfarin was 12 , now bumping to 14 tonight. I'm also simultaneously injecting with 70 mg Lovenox ( low molecular weight heparin) until INR reaches 3.0 because I have an active unresolved clot.

    My INR has been set st 3.5.

  • I Just saw this Kelly. Glad your out of the hospital. I still don't understand the ins and outs with how they are dosing you with the lovenox but I am happy you are feeling betteršŸ˜Œ I think I just figured it out... they are treating you at the 1.5 mg/ kg.

  • Hi Ken can you please clarify if you have been told that the cause of your Stroke was Antiphospholipid Syndrome/Hughes Syndrome/APS/Sticky Blood or any names similar to that and if they tested you for the antibodies for that disease?

    There are many causes for having a Stroke. This is a forum for those that have a particular disease that causes Sticky Blood but the information and advice on here may not be relevant to you if you have not been or are being diagnosed with Hughes Syndrome which is NOT just about having a stroke.

  • Thank you APSnotFab and I hope this more directed question helps guide us, Ken. The answer you give will determine what kind of ( hematology ) specialist you need.

    Ken, I'll await your response to APsnotFab before calling my doctor, so we can make sure you are getting precisely what you need .

    It is very confusing- if you did get a test result back flagged positive for anti phospho lipid antibodies, I can help guide you in the Austin area. I have a lead already, but a want to verify it.

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