Searching for a cure for APS

Last week I met with my hematologist. He said I had had the trifecta of antibodies with my last stroke. The blood test results were:

Anti-Cardio IGG >=40

Anti-Cardio IGA <11

Antiphospholipid Antibodies IgM or IgG ACA>40 MPL/GPI, IgM or IgG anti-B2GPI antibodies, or a Lupus anticoagulant.

I do not know what any of this means. My background is BSEE so I can design a processor or develop an Ecosystem around the world to support a processor. Prior to my last stroke, I was taking Xarelto and had my second and more severe stroke. Xarelto does not work for me.

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  • Hi Ken

    What your Hemo is telling you is that the cause of your Stroke was sticky blood/Hughes Syndrome/Antiphospholipid Syndrome because you have tested positive to the antibodies that this disease causes. I'm a bit confused about your results but can see you are positive to at least one but not sure about the other two as you don't seem to have given those results. No matter, a positive is a positive and from your previous post it shows it's your second test so confirms the diagnosis.

    Secondly, as I told you in your first post in May there is no cure for this disease at the moment.

    Xarelto Would not be suitable for you because you have had a stroke and this drug has not been tested for those with arterial clots so you should not have been put on it. I'm assuming your on warfarin now?

  • sorry to disagree , a cure for APS exists, we just haven't found it or discovered it yet:)

    regards, ken

  • Please let me know if you find one!

  • How do I confirm that the APS charity in the UK is linked with this BLOG?

  • Ken please PM me and I will give you all the details.

  • can someone give me the link to the site with exercises to help improve peripheral vision? thanks, ken

  • Ken. Go into google and type exercises to improve peripheral vision in search box, good luck!

  • KEN - you keep posting the same question, are you having a 'brain fog' day? My answer ad before - Suggest you pm Apsnotfab for this answer, as suggested by KellyinTexas 9 days ago.

  • Congratulations on your trifecta and commiserations on joining us here with no cure in sight just yet. You say your GP prescribed Xarelto-what dosage? Was your stroke due to a clot or bleed in your brain? As you probably have gathered on here, there is just not one single anticoag that fits all. Do you have a specialist that looks after and more importantly, understands and treats APS?

    I tried Warfarin then Clexane and still clotted. I'm now on 20mg Xarelto + 100 mg Aspirin and have never felt better. I was warned that the Xarelto is only effective if taken at the same time each day so I'm fairly religious about this. I wish you a speedy recovery!

  • Ozchick, both strokes were clots, first time I was too stupid to understand what had happened my GP would say I had an "event" the second stroke was worse I lost peripheral vision but got to meet some of best people in Seton Austin rehab in some respects it was worth it.

  • Sorry I have to correct my last reply, it was St.David's rehab they were GREAT, they have an adaptive driving program to help stroke survivors regain some independence, drive limited places,"milk runs", near home, where you know exactly how to get there. etc. etc . meeting that team was almost having the stroke.

  • Bleeding can cause a stroke as well as clotting.

  • Hi Puska,

    It is important to say that "we do not bleed from HS/APS but CLOT " (I have now quoted the man who found this illness prof Graham Hughes).

    Best wishes from Kerstin in Stockholm

  • Indeed Kerstin but the treatment for Hughes (anticoagulation) can sometimes cause a bleed (in the brain and elsewhere). Hence I was following up on ozchick's question.

  • can someone give me the link to the site with exercise to help improve peripheral vision? thanks, ken

  • Suggest you pm Apsnotfab for this answer, as suggested by KellyinTexas 9 days ago.

  • I agree with HollyHeski MaryF

  • Ken I will PM you. As for a site for exercises for your vision, it was 6 years ago that I did it. Google site mapping tests.

  • Hey Ken,

    It's Kelly again- here in the hill country with you- near Hunt.

    Here is what we are asking you:

    1. What blood thinning regiment are you on currently?

    2. What has your hematologist set your INR at? I can tell you it absolutely needs to be at 3.5 if not slightly higher- that's a basic guide line for APS and cerebral involvement. I am going to tell you very plainly that if your hematologist does not know this then you are not in good hands. Again, please find the " pinned post " section regarding the RAPS Trial study within this forum. If you cannot, ask your hematologist to look it up in the Lancet - 2016 - hematology. Doctors Beverly Hunt and Hannah Cohen ( APS specialty Hematologists in London who work often with Profesdor Hughes) contributed to this trial.

    3. This brings me to my final question for you once more. Did you want me to ask for a name of another hematologist for you who mighr have a little more knowledge of APS, or after talking to your hematologist, do you feel comfortable ?

    If you say, " my current hematologist has me on warfarin and has my INR set at between 3.5-3.8, and keeps a tight eye. He's aware I can clot anywhere, at any time. I have a cardiologist checking me for heart issues and hypertension, and an internal medicine doc making sure kidneys are ok and all other internal organs are clot free. He seems to have a comprehensive handle on the entire spectrum of APS, from micro to macro clotting."

    Then I will say to you- very fine! Sounds like it's all under control.

    Ok? So you let me know. That's how this works. I'm being VERY straight forward with you so you get it . All at once and all in one place! We Texans shoot straight from the hip! Right? That's about the long and the short of it, my friend.

  • By the way, my brother in law is an internist in Austin. He makes rounds at Seton. His practice is on 38th st. Austin Family practice. Dr Richard Berry. He is in with Sid Roberts. If you are ever admitted I'll see if he can stop by and check on you. He just switched over to concierge medicine-getting ready to retire soon.

  • my warfarin regime is 5mg daily 6.0mg M/W/F. stay between 2.5-3.5 if it goes above 3.5 but below 4.0 let it ride. but if it goes 2.5 then add1.0 mg to T or Th and see what happens next week . warfarin's long half life and anything you eat can impact it, makes INR hard to manage. I think he misunderstood the RAPS Trial because we were discussing the trifecta of antibodies and clots on my heart valve and Xarelto. let me get a message to about RAPS Trial. if you know of another Hemo please share. and if you know of any online exercises to help peripheral vision pleases hare the link

  • On it!

    We've got your back! i don't know a lot about stroke. Sounds like Tucson does. Kersten from Sweden knows about the heart valves.

    A friend of mine in Austin goes to church with a hematologist- they advertised APS specialization. But sometimes that link just attaches. She was supposed to ask at church a couple of Sundays ago- the maranite lebanise Catholic Church in Austin. It's a woman who is supposed to have some background. If not, I'm going to ask my hematologist in San Antonio who he recommends in Austin. I have to call this morning and report my INR. That might be the best way to go. I'll ask.

    I'm thinking you need to be right at an INR of 4 unless you have some other issue that would make that unwise for you.

  • Also, as long as you are not on xeralto ( rivoroxaban) the RAPS trial is not a pressing matter right now for you or your hemo. ( although I would like for him to be aware of it for his continuing education purposes, as well as your own in case any other physician ever suggests putting you on it in the future. )

    Peripheral vision question- I remember reading that Lynn, APSnotFab responded to the rehab she trained herself with for her restoration of peripheral vision . You might PM her.( private message) her about links or ideas she could support you with . I am also haviving vision problems, but the are optic nerve damage and brain- an " intergration" problem. Optic neuropathy due to pure APS and not stroke.

  • Ken,

    The female oncologist I was referring to is named Dr Dina Tebchernay with the south Austin Texas Oncology Group. She herself is on holiday for two weeks- my friend thinks visiting family in Lebanon. I called and spoke to them and her nurse confirmed that no one in that particular location specialized in APS. It was just an outside marketing link that randomly got attached. That's why I wanted to confirm first.

    The nurse said the at the mid town location of Texas oncology there is a doctor with working knowledge of APS:

    Dr. Rubin DeCelis

    (512)421-4100

    I have a feeling they are going to want to keep your INR between 2.5-3.0.

    I have no way of confirming if this doctor has true "working knowledge " with APS.

    I asked my nurse ( Dr Holahan) for an Austin referral for you as well this morning. Let's see what she comes back with. I'd go with what my hematologist recommends- so let's wait. He leaves for Europe tomorrow on vacation!

    I'm flying out in the morning for Princeton. ( just across from Manhatten / NYC for the rest of June.) I'll be in contact none the less.

  • Ken- it's 6:30pm in Texas Monday Evening June 5th. Holahan s nurse did not call back with a tweaking of my INR regime ( I guess he approved of my suggestions of dropping some of my 17's as I'm 3.8 and only adding once a week if needed other wise keep at 16...) and so I didn't get a name of anyone in Austin.

    I'd give Rubin DeCelis a call.

  • Hi and welcome, yes you are positive for Hughes Syndrome/APS also known as Sticky Blood. It is important that you are put on the correct medication for this condition and also that your condition is managed by a specialist who fully understands Hughes Syndrome/APS, many on here from the USA do recommend various doctors they see. MaryF

  • Hi Ken,

    You have really had good answers on your question. Hope you will take good care of them.

    Best wishes from Kerstin in Stockholm

  • If as stated in your previous post your Inr is 2.5-3.5 it's probably too low. I had a third stroke in february while I had an Inr of 4. It's the strokes that destroy your brain not the Aps which is what causes the stroke. Apparently I'm a rare case not unique but rare as really my only symptom is strokes, certainly the only symptom that bothers me. I now self test and keep my Inr above 4.

  • I hope you are not letting your INR go too high! I do not know how old you are but when we get older we must be more careful with Warfarin though. Even if we have HS/APS.

    Kerstin

  • I have to keep my Inr between 4-4.5 my specialist rang me today and said he obtained all my Mri scans from my local hospital and has been studying them closely and they believe although I'm aware I've had 3 strokes they believe I've probably had 10 times that number that I've been unaware of. I'm 62 and have to maintain a high Inr to try and avoid further strokes. He says I also have cerebral small vessel disease and we will discuss it in more detail at my next appointment. Strange as I have no memory issues at all, no brain fog etc.

  • Currently, as Dr. Hughes himself has said, there is no cure for antiphospholipid syndrome. Likewise, there is no cure for other autoimmune diseases. Science is still working out the details of exactly what goes wrong in the immune system and how those error might be located and fixed. So currently, doctors treat autoimmune symptoms, but not causes.

    And in the case of us Sticky Bloods, there is a great deal of confusion about exactly which part of the multi dominoed clotting cascade our individual immune systems are reacting to. This seems to be the most logical explanation for why some of us do great on warfarin, others are fine on Plavix, heparin or just plain aspirin. And this is the primary reason why it is important to consult with a doctor who has successful experience treating our disease.

    But regarding root causes of autoimmune illnesses: the latest research on the gut biome and diet has been connecting some data dots between eating high carb foods – Especially gluten and sugar! -- with acquiring autoimmunity or other Western chronic diseases.

    As I have posted here before, I have embarked on a Cleveland clinic functional medicine diet and feel healthier and more energetic than I have in years. And my effective INR number has dropped low: asymptomatic at 1.7!! I'm not willing to conclude that the low-carb diet has cured me and therefore go off Warfarin, but I am certainly willing to conclude that at least in my case eating more vegetables and less carbs and sugar has helped a lot.

    If you are intrigued by this you might read either Grain Brain or Brain Maker by Dr. Perlmutter. In these books he explains the biochemistry of insulin and insulin growth hormone and how too much of these can cause problems.

  • Which book do you think is better Gina? I am going to get it I think

  • Brain Maker by Perlmutter is newer and contains summary of the latest bio chemical discoveries.

  • Have you had Ecochardiography with doppler on your heart/lung? How do you know of clots on the valves?

    I have pulmonary hypertension and leaking heartvalves. I have had very high bloodpressure which goes with HS/APS in my case. When I had my latest Eco my Cardilog was very satisfied with my INR keeping it at 4.0.

    I have had a lot of neurological symptoms from balance and ear and eyes. Bad vertigo. Saw double. Could not see on my right eye for some minutes.

    They have found I have microemboli and they are not seen on a Scan of today. If my INR goes too low I have my symptoms back. It is a tricky illness that hides in our body and suddenly explodes and we must have knowledge of it to get the power to find a Doctor who can treat it. Keep your bloodpressure down!

    Good Luck!

    Kerstin in Stockholm

  • Ken, my friend Carol in Austin called me yesterday to ask about you. Her friend the hematologist is back in the country and asked her if you had worked out the hematology situation. She said if you had any questions to share the list of possible hematologists with me - here on this forum is fine - it's secure- I can just privately tell her- and she would tell you which one she would recommend. ( unless you already have it worked out.)

  • THANKS, but I guess there is nothing to do just keep taking Warfarin to keep INR between 2.5-3.5 and hope research in UK discovers something. Wish

    there was more I could do. I connected TX oncology with the team that runs APS charity in UK, and America red cross an APSFA group in US. Does your friend have a Hemo that she recommends for APS?

  • THANKS, but I guess there is nothing to do just keep taking Warfarin to keep INR between 2.5-3.5 and hope research in UK discovers something. Wish

    there was more I could do. I connected TX oncology with the team that runs APS charity in UK, and America red cross an APSFA group in US. Does your friend have a Hemo that she recommends for APS?

  • Great job connecting Texas oncology to the team that runs the charity in the U.K.! As well as The one in the USA! I think you will find the big ( and very important) difference between USA protocol and UK ( Hughes specifically) protocol is that with cerebral arterial involvement you will need at least 3.5 INR or higher. Usually more upwards of 4. (2.5 will definitely be sub therapeutic for you.)

    I can ask if she knows of a specific heme that has APS experience. It is a better question than just wanting to see your list.

    I just flew in from Princeton two nights ago and had a few glitches with my INR. My hematologist in San Antonio wants my INR between 3.5-3.8) he listens to professor Hughes!) I dropped to 2.7 in Princeton so my internist there had my inject with Lovenox and called a hematologist in on my case immediately. This hematologist was quick to get aggressive because he knew how strong the relationship is with Hughes and the brain, and I have not had a full stroke. Only seizures ( small micro clots) and a TIA. So yes, I have cerebral involvement.

    I suffer large DVT's - frequently. And lots of other organ involvement.

  • Princeton? cool. hey, was the did the other APS patient in Austin able to connect with you?

  • No, I don't think so?

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