Good morning everyone. I recently posted another post. And was telling you guys in that post that I was going to go get checked out. A quick little reminder I was diagnosed in November of 2018 with a dvt and pe. I've been taking warfarin since then. I started having some knee pain around June and didn't think much about it. Well I did go to the emergency room and they found 3 new blood clots in my leg. 2 around my calf muscle and one behind my knee. My original clot i believe was down by my ankle. I did pretty good with keeping my levels between 2.0 - 3.0. So I'm going Tuesday to meet with a warfarin clinic to discuss some possible changes to my dosage. And if that doesn't work. I was told I may need to see a vascular surgeon to possibly get them removed. I know others who have been dealing with aps doesn't believe it is a progressive disorder but in all reality it is. You can even google it and it will tell you that it is. It's just not aggressively progressive. Let's see what happens next.
Kinda an update, yes 3 new clots were found and they raised my inr from 2.0 - 3.0 to 2.5. - 3.0. I go back to the hematologist in a couple weeks to see what they are going to do. In the mean time I'm researching doctors near me that specializes with aps patients so any ideas would help
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markdjr1984
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I really don’t know what you mean by progressive as I certainly can’t find anything on google that suggests that it is.
The problem with APS is that it is very much an individual disease and what treatment can suit one person will be useless for another. Even twins with the same disease and same symptoms have to be treated differently!
You mention you have had an INR of 2-3 and there in may lie your problem. Many people with APS need a much higher iNR 3-4 in some cases.
You also say you are speaking to the warfarin clinic, in my experiance they are Excellant for those with AFib but have little knowledge for those with APS and certainly those with recurrent clotting. You urgently need to be referred to a heamatologist and preferably one with APS knowledge. You may need to have you anticoagulation looked at and possibly an anti platelet added which helps the blood from being so sticky.
The only thing that makes APS “progressive” is not getting the proper treatment. I do hope you manage to find yours.
I agree with all you have written, I have to say it's about meeting the Dr with experience of this disease they are very hard to find. This unlocked forum is fantastic.
In your situation at the moment I think you need a Haematologist who is an APS specialist rather than a Rheumatologist as you need your blood clotting and therefore your anticoagulation sorted out.
Hi, we can re clot at what ever our INR is! The key to APS is we are all unique but we can manage our condition.The usual INR was set for me at 3-4, I can't take waefarin and have been on clexane for over 20 years.
You really need an APS specialist to help - please research one for your area - we can control this x
Today’s norm in treating APS is actually an INR of 2-3 after first thrombosis and upping it to 3-4 after a second incident. Higher INR after a single clot was proven to be no more preventative than 2-3 INR in the majority of patients yet far more dangerous in regards to significant bleeds. Usually after a second unprovoked clot they do consider an INR increase though.
My 2 cents is a ditto: Yes, we are all metabolically different so consulting with a doc who has experience treating APS patients is critical! I have been fortunate that my ( now retired) diagnosing doc, as well as my current doc, both know about APS. So, I have been symptom free on warfarin, with a consistent Vitamin K intake, for over 25 years.
Concerning the word " progressive,; " this may actually refer to our immune systems' sad tendency to over-react --get a bad cold and you may also get a new clot. I will add that Dr Hughes did find, decades ago, a correlation between APS and gluten sensitivity, aka, celiac. I went gluten free in 2004 and since then all my blood tests for APS are now negative. I remain on warfarin just in case.
You might also seek a functional med doc and/or try an elimination diet on your own. This difficult and annoying diet ( yes it is!)may reveal a food sensitivity that manifests as an autoimmune reaction. That diet revealed I am also allergic to cashews. Not other nuts - just cashews. And the functional med doc explained that cashew is a " high histamine food," and that I need not eliminate, but I should monitor the amount of tomatoes and eggplant I eat as they also are high histamine foods. So : spaghetti with marinara sauce? Yes. But no tomatoes on my sandwich that day and no eggplant for a side!
For a few unlucky patients it is “refractory - Thrombotic.” and others seem to stabilize and are quite steady once the diagnosis is made and the correct anticoagulant any been found ( one that suits the patient) and the correct intensity has been set for that particular anticoagulant. ( for example, month commonly an INR for warfarin.)
For a very few less fortunate patients, the disease process either outpaces the anticoagulant’s ability to control the clotting, or it’s a combination inflammatory disease processes contributing push the APS beyond it’s limits to be properly controlled with combinations of immune therapies ( Including but not limited to DMARDS, Biologics, and of course the first line treatment most here will know of,the modulator, hydroxychloroquine.
I am in the incredibly unlucky few ( less than 1% of my doctor’s / rheum patients ) who are refractory thrombotic. This diagnosis was confirmed by Prof. Hannah Cohen on 29 November.
Are they calling it “progressive?” No.
Will it continue to progress? We don’t know. It has progressed. Is it the same as refractory thrombotic? In my opinion, this is possible.
I live in Sweden and I am triple positive to APS with also high titres. I need an INR between 3.5-4.0 and I self test since several years back. I have been on Warfarin since 2012 and I have to take a Fragminshot if the INR is under 3.5 one day. We very often have a higher INR in the vein than in the fingertip. But the vein value is the correct one always!
Especially if you are also positive to Lupus Anticoagulant your Specialist (a Rheumatologe or an Hematologe) wants you to self test as the INR may then change a lot from day to day. We are all different with this illness but do need a Specialist which may be difficult to find as this is a very rare illness and so very few Doctors know about it.
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