Hello. My name is Lynn. Eleven years ago, after 2 late miscarriages (17 weeks) and several stroke like episodes I was diagnosed with Primary Antiphospholipid Syndrome and have been on warfarin ever since with bridging doses of clexane when inr is not in range. I have continued to have some TIA like symptoms approx twice a year. In the past year I have had no Antiphospholipid antibodies in blood tests. I have moved house and my new rheumatologist thinks I have lupus with secondary APS. My new haematologist is now suggesting that a high treatment rather than preventative dose of Apixaban would be a better option. I would appreciate any thoughts you may have. I am scared of more strokes to be honest. The decision is mine and I will see the rheumatologist in a few weeks. Thank you.
misdiagnosed ?: Hello. My name is Lynn... - Hughes Syndrome A...
misdiagnosed ?
DOAC medications of which Apixiban is one, is contraindicated for APS. If you read the PIL for that drug it will actually say that.
Some APS patients that were already taking a DOAC when the new guidelines came in and wanted to stay on them had to have a conversation with their particular consultant about if it was wise to stay on it or not.
For somebody who is just diagnosed, switching would now be contraindicated and I know my heamatologist would certainly not entertain putting me on one. In the end it’s a decision for you and your consultant though.
Thank you
When you are due to see the consultant, it would be helpful to write out in bullet points your medical history and also medications, so you remember every detail in terms of questions at the time. MaryF
I have been told that warfarin is the best for APS .He could higher your range. What is it now.
My range is 4 to 4.5. He doesn't want to go any higher which I agree with. Thank you for replying.
Hi,
We have talked several years ago and I remember you only had an INR of 3.0 and we suggested you should higher it. I need an INR of around 4.0.
You told us you had the same vein- and finger value and thus you can be lucky. Most of us with LA have different values when selftesting which makes it difficult to rely on the INR being correct.
I also know that Warfarin is the best for us with APS. Hope you have an Specialist who knows this illness. I suggest you reread your questions from 5 and 6 years ago.
Best wishes from Kerstin in Stockholm
Thank you Kerstin. I should have explained that things have changed a lot since my earlier questions. My inr target is now 4 to 4.5 . Warfarin is indeed best for APS but I am now also positive for sle lupus too. I may have same vein and finger sample results but I have not been lucky. I have experienced TIA's when inr was well in range and also whilst taking a bridging clexane injection when inr was not in range. My inr is so volatile I have to test daily and speak to my hospital anticoag nurse twice a week. Aspirin has also been added to my prescription as well as hydroxychloroquine. I do not need to reread my questions from 5 and 6 years ago and am saddened that you suggest this. On top of all this I have also developed Parkinson's Disease. I came here just to ask for any ideas and some support not to be told " I suggest you re-read your questions from 5 and 6 years ago".
Could you please tell me how you can be positive to SLE Lupus? In a blood sample?
I am sorry you have also got Parkinson´s Disease. Is another Doctor treating you for that illness? I d id not know all these things when I answered your question. You have obviously not only APS and that must make the correct treatment more difficult. I know you have told us some years ago you have Lupus Anticoagulant positive like I also have. That is not the same as the illness Lupus but I am sure you know that. I have had positive S-DNA-antibodies pointing often to LUPUS a couple of times
I had more than 4 of the 11 lupus diagnostic criteria. One of which was a positive ana. Now you can have a positive ana and be perfectly healthy but it is considered in lupus diagnosis if you also have other criteria symptoms. My more obvious symptoms are a very red photosensitive rash, swollen joints, fatigue, mouth and nasal sores, chest pain, clotting incidents.
Hi again,
I know that but I also have learnt that there is no blood test for SLE Lupus. The only blood test that could point to SLE Lupus is DNA-antibodies which I had a couple of times in a low titre, but as you say other diagnostic criteria must show up of course. It can be very difficult to get a correct diagnose of these autoimmun illnesses as they often go hand in hand. That is why it is so important to have a Specialist of autoimmun illnesses who works with people like us.
At times, when people come back on here, they find it helpful to go and look back at previous answers to questions.. I have had this myself on other forums, please do get your B12 checked alongside your D, Ferritin, Folate and Thyroid, it is not unusual to have low B12 when we have autoimmune disease. For your interest: parkinsonsnewstoday.com/new... MaryF
Thank you for your reply. I am on lifelong supplements for vit d and folate deficiencies and a regular injection for b12 deficiency. Ferritin and thyroid are OK but regularly checked.
That is good news that those things are in place. MaryF
I spent some time reading back through your posts over these last several years.
I would ask your doctor if it really matters if the diagnosis matters if it’s primary or secondary APS.
The point is you do intermittently have antibodies, and symptoms that cause you issues.
You can trial apixiban, and see if it works for you. Ask about the wisdom of adding a tiny amount of anti platelet, like clopidogrel, in addition to the apixiban.
I myself clotted on apixiban, but I do demonstrate very aggressive clotting. ( however, I have low- med titers, and initially they sometimes went sero negative.)
Thank you so much for your constructive and helpful reply. I will discuss what you have suggested with my specialist, Thank you.
you need to be properly tested for aps it’s z doe if ic blood test. Aps is different to lupus. It’s probably worth trying to get a referral to a haematologist or rheumatologistblood tests they are required for diagnosing aps are anti cardiolipin antibodies and lupus anticoagulant. Although it has lupus in the blood test request, it’s not a test for lupus. But it is confusing You should def get a referral in view of your history. There’s still not enough of the medical profession aware of APS. Thry often need a nudge in the right direction!!
Thank you, Teresa Yes I was diagnosed with APS ... antibeta2glycoprotein was 10 x the normal rate, LA positive, and ANA positive 12 years ago. Then last Nov I was told I also have lupus but the antibeta2glycoprotein was no longer present. I see rheumatologist, haematologist, neurologist and stroke team. You are right this is all confusing and APS is still not fully understood by all of our medics. I have felt very vulnerable lately as my condition worsens so I really appreciate your supportive reply, thank you.
hopefully they’ll keep
You on warfarin with sn actudlmdiahnosis of APS they might try to chsnge you yo the new anticoagulants but thry Hsve been proved not to be as effective with APS fo stick with warfarin if you csn st the moment good luck
If your INR is volatile and you are already at above a 4 and on HCQ ( also acts like a blood thinner) and an antiplatelet(aspirin) your hematologist is likely correct to think switching to a higher than standard dose of a DOAC might be safer at avoiding a hemorrhage and preventing the chance of another out of range clot.
Thank you. You make a very useful point here. I am thinking you may be right and this is the way to go as all else seems to be failing thus far.
This may just add more confusion to your plans but I wondered if you would mind me suggesting three things that have worked for me. Obviously you will need to discuss them with your team but I know my team would never allow me to be on DOACs
First of all, have you tried Acenocoumarol as an anticoagulant? It works the same as Warfarin and you still have to have regular INRs but it has a much shorter half life so you can change the dosage and it has a much quicker effect which works brilliantly if you self test too so can pick up a falling INR really quickly. Having said that, my team also raised my target INR to 5 as I noticed my really good days were when I was above target range. I think symptoms are more important than INR with APS. I can cut myself even at that level and barely bleed at all.
Secondly, Rituximab infusions have been a life changer for me. First time I’ve ever had stable INRs. They don’t work for everyone but maybe worth investigating.
Best of luck with whatever you decide. I always go with the idea that you know your body best as you have to live with it! 😂
Thank you so much, I've taken notes from your reply!!
Hello from California- I am not a medical expert but I will share what I have learned. I see Dr. Daniel Wallace in Bevery Hills, CA. He is brilliant and an expert.in Lupus (which I do not have, bybthe way). I had 3 miscarriages and ultimately it was determined that I have APS. This was 15 years ago. I only took Lovenox during pregnancy and then was advised to stop. I have take an 81mg aspirin every day since, unless I have had a need to go bavk on a stronger anticoagulent. My internist tested my blood again about 4 years ago and said there was no APS. When I saw Dr. Wallace he said I have only 2 of the 3 markers for APS which still is cause for concern, so I remain on the aspirin. During the pandemic, I contracted the first and worst variant. A DVT was found in my lower leg, so I was put on Eloquis, which Iblater found out is contraindicated in patients with APS. A Hemotologist put me on this medication for 3 months. Thank God I did not suffer any side effects. I am generally healthy, but a tumor was.found in my kidney and recently, I had a partial nephrectomy to remove wgat was found to be cancer. My surgeon believes he got clean margins. Scans for the next 18 months will determine if I am cancer free. I am on a 30 day dose of Lovenox, again, tonprevent post operative clots. My point here is that blood tests are not all as accurate, so please question if you have been told.you no longer have APS. For my particular APS, aspirin has worked well. My INR values are always good. By the way, I have learned that those with APS should never get major organ biopsies due to the significant threat of clots. I did not get a biopsie of my kidney, but thank God, I had a knowledgeable surgeon that aggressively got me for the surgery because the cancer is an aggressive form. Best to you and please.feel.free to video visit Dr. Daniel Wallace. He is remarkable!
Thank you you have given me more info to inform my decision. I wish you well with your scans. Lots of good advice here thank you. x
Wishing you a complete and speedy recovery.
With good wishes,
Ros
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