This is the back of my leg ( just above the bend of my knee ) yesterday. My arms are clotting also. When I clot, I tend to clot “ every where at once.” It’s like my body gets “ rushed “ with antibodies. I have not had any kind of dip in INR to cause this. My INR is set at about 4.0.
I am in 16.75 mg warfarin at the exact same time every night.
I eat the exact same amount of greens each day without fail. ( I follow the same line of thinking as cath Atkins. )
Nothing in my life , diet , no virus in system, etc... nothing can account for it.
It is my belief that our bodies go into APS “ flares” and when this happens we have antibodies “ rush “ our systems. I had posted this question some months ago trying to get fee back but not a lot of you seem to have this particular phenomenon with a rush of systemic clotting to all limbs. ( both arms, both legs, some organs- likely organs are MAPS- micro APS - micro clotting- very tiny and warfarin is handeling it fairly well compared to pre diagnosis and warfarin commencement.).
I keep clotting so it is once again considered “ therapy failure.”
I’ve failed before with DVT’s on warfarin alone, and was switched to LMWH exclusively- and got a DVT within less than a month- and symptoms far sooner. That did NOT work.
This has been a rough week.
Trying to save my eyesight, and possibly- distant future if we can’t get under control- limb. ( right arm, as Brachial has become quite narrowed with so many repeated DVT’s- always resolves, but at times can take up to 4 weeks- and superficial struggle to do a ,” work around.”
And brain is a concern- as my leg livedo can be quite classically pronounced, as I’ve posted a photo of once. ( livedo has been more closely associated with stroke tendency, but I’m unclear by what degree the risk factor increases.)
We are out of safe and reasonable options, I’m now told.
It’s very unsettling ( to say the VERY least) to go into uncharted waters with regards to anticoagulation ( new DOAC Meds) that did not meet RAPS trial .
Here is the Protocol/ Plan for me set forth:
l. Cytoxan (1000mg/m2) IV 60 every 4 weeks x 3 - so three months
II. THEN, after infusions- follow it with Either methotrexate 25mg PO ( then I can’t read his writing .. I think it’s more than once a day.. has 4 initial! I’ll post photo of his hand written instructions to me this in another photo... )
OR...
Imuran... 50 mg PO QD
And... concurrently, from day one, bring off the warfarin and I up the new DOAC. ( Xeralto or Eloquis WITH an anti platelet. )
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The idea is with suppression there will not be such a great need for thinning- well- yes there will be of course. Life long obviously. But hopefully it will make it “ safe” for me to be on a DOAC with anti platelet added as “ extra insurance coverage” against forming a clot.
Aggressively work on this from the auto immune stand point- for about 18 months I think. Then see how often we need to revisit that with the less aggressive oral drugs like Imuran or methotrexate.
Again, for those of you who have been through a similar treatment with any kind of actual suppression, or administration who can speak to because of your archiving of publications ( vetting of publications) talents, years of experience, and wisdom to be admin- I’m listening and needing your stories, guidance, advice. I’ll be making this decision ultimately.
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Kelly, after reading this I’m more convinced that Rituxan is a possibility, if you tolerate it. It suppresses complements above CD 20. I’m no expert on complements, but I’m gonna look them up as soon as I post this to remind myself exactly what they are. Back soon. Nancy
Ah- see the other post- I replied to you Re the retuximab and my neurologist’s lovely response. ( he’s concerned about auto immune suppression with retuximab.)!
Kelly, I still get confused about complements but I’m giving it a try:
Complements are specialized types of white blood cells. There are about 40 different kinds. Each type of white blood cell makes specific antibodies. Rituxan is a monoclonal antibody derived from mouse cells. It first became available in 1997 and I first took it in 2001 when I had lymphoma. Rituxan blocks antibody production by inhibiting production of complements CD 20 through 40. So it inhibit specific antibody production above CD 20. Are these THE antibodies causing your problems? Don’t know. But I do know I have seen professional articles linking its use to APS.
I first started using it for vasculitis, I think in 2007. The FDA had just approved it for vasculitis use so my insurance would pay for it. It’s very expensive.
Yep. I called my ins on it some months ago. It’s “ experimental “ for APS application. Not covered. But perhaps for vasculitis...?
But Mayo seems to have worked it out not to be experimental for APS. But I can’t travel there right now.
My GP yesterday wants me on a plane back to England for consultations over Thanksgiving.
Really?!?!?!! I can’t even inject heparin I’m such a high INR. Sonogram today may or may not even be accurate according to my vascular surgeon.
Pain and subsequent bruising tells all. Maybe just not where. If I bend knee it’s much worse. Or arm. I haven slept in over a week. Maybe only 30 min at a time here or there... because you will move in your sleep and invariably bend something...
That’s great info Nancy. That’s probably why ( in some limited fashion) your Benadryl works in come relationship with the mast cells against migraine. I also recently studied ( with what limited pea brain APS has graciously decided to leave me with this month) that one of these compliments - actually produces Heparin. I never realized we poduced Heparin. But of course it makes sense since “natural” fractionated pourcine Heparin would be used !
Erkan is a mouse modeler- and derived much data on Rituximab from these studies.
I am so sorry. Things have got to get BETTER. I just know, for whatever reason, I had good luck with Rituxan. And, yes, is approved by many insurances. In 2012, last time I had it, was about 3000$ a treatment. AND, remember, I have an IMMUNE deficience(CVID) , tho did not know that in 2012.
I am much more likely to have immune system tank than average person due to immune deficiency. But, I didn’t. It’s a shame that dr got burned with Rituxan as it affects his decision to use it on anyone else.
I think an immunsuppressant makes a lot of sense under the circumstances. My only question is have they considered prednisone? For autoimmune flares that usually is the first go to and works very fast.
I haven't been on cytoxan before, but I was on methotrexate before for lupus flares. It is given a lot.
I have the same question about APS flares, since when I was in the hospital for a seizure I seemed to be in some combined APS lupus flare.
I suspect the doctors are learning from your case. It seems in autoimmune diseases you have to try things to see what works. No one will know for sure beforehand what treatment will be most helpful.
Whatever you end up taking, I do hope it helps a great deal.
Kelly I'm sorry you are so challenged on such a daily basis. Just thought I'd ask. I wonder if you have a double clotting factor or more of some type going on. For instance I have primary APS and Factor V Leiden heterozygous; from one parent only, luckily. Have you been tested for any other types of clotting issues that would/could create so much chaos?
I’ve often though the same thing. I think I have? I wish I would have been sent to a hematologist BEFORE I clotted.
I went to rheum- he drew blood for APS antibodies- came back positive, drew again - 12 week wait- cane back positive again- and one week later I was in hospital with first big DVT- Warfarin for life, etc.
I don’t know who has checked for what. Some things can’t be checked on warfarin. But I don’t know which ones.
I know Erkan in NYC checked all the main hereditary ones- Leiden 5, etc. ( well, it was on his list...) all came back ok.
I need to ask my APS specialty heme I suppose? I just assume it’s all been covered.
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Can APS come and go, like having lupus flair ups? 
IV Therapy safe with APS?
anything but warfarin, please!!!
What are Micro Clots? Are they dangerous?
