Treatment choices in A P S .

[silemoran]

Are the new anticoagulant s suitable for suffers of A P S .

[Lure2]

Hi silemoran,

You have been here for a long time but you have written very short reviews of your lifestory.

I know you live in Ireland and were on Warfarin recently. That is all.

Before you change to another bloodthinner I would like to ask if you are not satisficed with the one you have today. I wonder if you have a Speicialist for our illness and if you are selftesting and on what INR your are put on. Also what sort of symptoms you have.

The oral drugs are not approved in all countries (perhaps all countrues) for arterial clots needing an INR above 3.0. Rivaroxaban are only approved for an INR UNDER 3.0 (venus clots). It has not an antidot like the Warfarin has in LMW Heparin.

I would say that today Warfarin is the best choise for our illness especially with arterial clots and all the antibodies in high titres also. But in some countries it can be very difficult to get the Specialists to understand that we need a steady INR and also a high INR around 4.0 to get rid of the clots and feel rather ok. Also you should selftest rather often and doublecheque with the lab and that can be difficult and also expensive in many countries.

If I did not manage with my Warfarin I would try LMW Heparin which anticoagulant many members are on here and which also works well with Hughes Syndrome.

How is Hughes Syndrome treated best in Ireland?

Best wishes from Kerstin in Stockholm

[silemoran in reply to Lure2]

Thank you for your reply yes I am on warfarin plus innohep when I n r is not in range ,my range is 2.5 -3.5 .on warfarin since 1989 .suffered pulmonary embolism. I self test and send in results by mobile message to my clinic .I have been to Saint Thomas's and seen Dr Edwards some years ago who put me on Plaquenil .I do not know of anyone in Ireland with A P S .thank you all I keep in touch with health unlocked which I find is a great lifeline in coping with A P S . I have a Haematologist called Dr Barry White which I attend yearly .regards Sile Moran .

[MaryF Administrator]

You have had a great answer from Kerstin, some in Ireland due to the lack of consultants travel to London for an appointment. I hope we can help you in some way. MaryF

[silemoran in reply to MaryF]

Thank you Mary I replied to Kerstin.

[silemoran in reply to MaryF]

I do not know of any consultant in Ireland that deals with A P S .

[Tofino5]

Hi silemoran, I made this change on January 31, 2017, from warfarin to apixiban.

What does your doctor want to do?

I have high titres of the 3 antibodies, Sjogren's, Hashimoto's, migraines, etc. I was on warfarin for 10 1/2 years, along with prescribed low dose aspirin and vitamin K. I am now fortunate enough to have access to a wonderful doctor specializing in APS here in Colorado. She took me off the warfarin and put me on apixiban (Eliquis) with low dose aspirin. This was to see if it would help my migraines. I'm still in the assessment period hoping and praying it will help.

For 10 1/2 years my INR's were all over the place, up, down all the time. That's why I took Vitamin K pills. I watched my foods obsessively, but nothing seemed to make any difference. I have my Dad's very small blood vessels, so every two weeks I was going to the lab for a stick in the hand so I had black and blue hands all the time.

So I am really hoping this med will be good for me, and for the migraines. The doctor said if it did not help the migraines, then I could decide if I would rather take warfarin once a day, or the apixiban twice a day. I see that Dr Hughes, that wonderful man, doesn't recommend the alternatives. My doctor knows Dr Hughes and has had conferences with him, and I have no doubt in her ability to work out what is best for me, so I feel very comfortable with this plan.

I did have good experience with warfarin - no major clots while on warfarin, had micro clotting periodically, but the crazy INR's were hard to deal with. The reason for the change was to see if it would help the migraines, since I have a bad time with them.

Also, I am in the US, I know things are very different here. I hope any of that might be helpful.

Good luck, Anita

[Lure2 in reply to Tofino5]

Hi Anita,

I wonder why you took vitamin K pills? Did that help when the INR was all over the place? As far as I know K-vit only LOWER your INR

What therapeutic INR were you put on before the switch to Eliquis? Did you only test every second week and in the vein or hand?

So you could decide if you would like to take Warfarin once a day or Eliquis (Apixiban?) twice a day. (?)

Has your Doctor ever suggested LMW Heparin and also perhaps low dose Aspirin

Unusual way of anticoagulation I think.

I do not know about Apixiban only Rivaroxaban and that drug you can not take if you need an INR over 3.0 which I guess you do as you are triple-positive with high titres.

Are you sure your Doctor knows APS well?

Kerstin in Stockholm

[Tofino5 in reply to Lure2]

Hi Kerstin, yes it sounds odd I know, especially since I read about the things being done in Europe and surrounds. I will try to answer your questions.

I've been on low dose aspirin all along.

Vitamin K pills were added by the hematologist because there was some evidence suggesting that supplementing the K to the diet might help people with unstable INR's. That was the reason, but it didn't help me.

My range was 2.5 to 3.5. I went to the lab so often because of erratic INR's. So, sometimes it was 3 weeks, but generally about twice a month. Self testing didn't work out for me.

The first thing the doc tried was switching me from low dose aspirin to Plavix - to try to help the migraines. That didn't help, so I went back on the aspirin. She is trying to find a way to help my headaches - if they are related to APS (they may or may not be related), then these changes could help. But, if the migraines aren't related to the APS, then it won't help.

Rivaroxaban is similar to apixaban, but apparently the way it works is different in that its effectiveness spikes, then drops low. The apixiban rises up, then stays at a much higher level in the bloodstream. Now this is a non-scientist talking who maybe isn't the brightest bulb in the pack, but is how I understand it. She would not put me on Rivaroxaban.

Yes, she knows APS well. She is trying to help minimize symptoms for me. I appreciate that she sees me as a whole person, not a disease. After 9 years with a neurologist, trying every migraine preventive and getting no relief, maybe I have a chance with this plan - I guess that means I hope the headaches are related to the APS.

Well, that is a book. Sorry, Anita

[Lure2 in reply to Tofino5]

Dear Anita,

I believe to succeed with Warfarin you must selftest very often and follow your INR and keep it stable. Make notes of every change as Constancy is the key.

It is difficult to be on Warfarin with Hughes Syndrome and our autoantibodies but Warfarin I believe is the best option today (hope new drugs will come but still the orals are found unsafe). This is if you have got arterial clots that need an INR over an INR of 3.0. Many of us need that high INR.

I need an INR of 4.0 and if i drop I can take a Heparinshot till I come back on my usual INR-target again. During that time I take my Warfarin in the everning as usual.

Otherwise take LMW Heparin and perhaps something else on top of it.

I have listened on what prof Hughes says and this is Europe.

What does your Doctor say about that as you have the possibility to decide yourself about your anticoagulation?

I think you have not yet been properly anticoagulated (stable and high enough).

Good Luck!

Kerstin

[Tofino5 in reply to Lure2]

Hi Kerstin,

Thanks for your thoughtful reply.

I kept very careful track for many years. Always very attuned to what I ate and very compliant with meds and testing. Not everyone has a stable INR and I'm one of them.

You must also know that not everyone can self-test. It doesn't work for everybody. It would have been nice if it did.

Anita

[silemoran]

Thank you so much Anita I am awaiting information from my specialist in Ireland now as I have very painful arms from blood tests .