This was at Vascular Surgeon's office this past Week. The office was very chilly, so it always exascerbates the livido. I still manage to get DVT's despite proper anticoagulation, so I believe an antiplatelet needs to be added. The skin thrombosis ( which is what livido is according to the London Lupus center website) is evidence of this, I believe, since my INR was 3.5. ( although that is the low end of my range.)
The doctor was shocked...he couldn't believe it took 17 mg of Coumadin daily to get my INR to 3.5. On top of that he couldn't believe i was in livido at 3.5...he thought I would be hemorrhaging out...
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KellyInTexas
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Besides a beautiful leg of a woman .........., that is really a perfect picture of a Livedo Reticularis. Mine looked like that but not so evident and distinct perhaps and was also before I was properly anticoagulated.
Kersten- I replied to you- and asked you a question about lupus anticoagulant antibody but accidentally put it under Debbs reply. Do you mind reading it there instead, sorry!
Yes, I've been looking back at my notes. I wish there were a way to send you a photo of my INR record. ( without posting it for everyone- that would be annoying for everyone!
I fluctuate that much in just one or two days.
My antibodies were low to low- medium only. In fact, I did go negative. Interestingly I still clot like crazy while "negative."
I also tested positive for the ," additional antibody" on the advanced Lupus AVISE screen. The phosphatidylserine/ prothrombin IgG
Our son Grant also tested positive for this one, as well as on other one called phosphatidylethanolamine AB ( IGM)
He was symptomatic with mild migraines. He has ulcerative colitis as well and mild Asperger's ( autism.) he was negative for the traditional three tests.
I'm thinking some of us are extremely sensitive to these "additional prothrombotic antibodies" and I personally think more research needs to be done on this. It may explain sero negative patients more clearly who are so symptomatic, yet who are not tested for these additional antibodies. A word of caution: I go in and out of sero negative status with these anti bodies also, and continue to clot aggressively while sero negative.
Why do you not eat green veggies at restaurants? Is it to more precisely control the amount you get into your body? In other words, if you just wait until your home, you know exactly the amount so you can be assured its steady? The hematologist tells me to keep it ," reasonably steady."
When I'm with a group, I don't want to the the only one " Dictating" where we go. It's not fair to others, so I've learned also to just eat greens when I get home. I buy fresh spinach and make a quick salad with fresh mozzarella, balsamic vinegar, just a tiny tiny tiny bit of olive oil ( yes I know about olive oil so just a tiny bit) salt and pepper. I just reach in bag and grab a hand ful. That's how I measure... usually this is at lunch. For dinner I have additional fresh veggie - we cook at home. Fresh asparagus. ( 4 or 5 spears, or broccoli- not very much.)
Yes, I try to measure the vein value against the finger prick ( we call it that, too) from time to time.
They are not very good at honoring my requests to. I do know after my initial clot ( and diagnosis) 8 months ago I did go back down to normal. With subsequent ER trips to check , I ask for a d dimer. They tell me no...
really ? They also tell me that because I'm in such high doses of Coumadin I can't clot. They will not scan my arm. ( this is after blood draw.) Then I have to explain exactly what APS is to them... then reluctantly they order a scan... only to have it show a clot...
Yes Kelly a beautiful leg for sure! I hope u r feeling better! My arms get like that sometimes! I just thought it was my pale skin!!! Lol... I was same way 15 mg for warfarin to keep me at 2.5! So I went to the shots! Have u thought about getting the shots?
Yes. We went exclusively to Lovenox shots this spring. I felt horrible- return of migraines three times a week. I was well in range with anti xa factor- high end of normal. I.64
Then I got a DVT at week 5.
So I got pulled off . Put back on warfarin.
I actually think I've got another darn DVT again...right now. The problem is I no longer trust my hematologist. He just keeps doing the same thing again and again.
This is why I'm studying patients day... I'm having to play my own heme. He wants to put me on xeralto. No no no!!!!! Not with a TIA and seizures and a INR target of 3.5 to 3.8 or 4.0. Dr Hannah Cohen isuggesys an older anti platelet called dipyridamole. I spoke with my brother in law about it today. He's an internist in Austin. ( he said it's an older drug. )
My hematologist -He had never even heard of the RAPS trial.
My whole family is in the mountains in Vail Colorado celebrating this week without me... it's my husbands birthday. My parents in law 60th wedding anniversary. It's too far away from any hospital for me to travel right now. I'm way too unstable. Everyone understood-but my mother in law was very sad. No one is used to me being so sick. This really is new for all of us.
My brother in law may just have me come stay with him and he may put me in the hospital in Austin and have me start with his favorite hematologist and rheumatologist in Austin. I hate to start over in a new city further away- but really I haven't lost much.
I guess it's fairly common? I can't seem to get my APS under control very well. I'm starting to wonder if I've become LA as well. Can't test now, as I'm on warfarin. I have only tested positive for the other two. What do you suspect? I keep greens stable. I'm fluctuating quite erratically. More than usual. Yes, like you there is a difference between the finger and vein value. ( we say finger capillary and vein value.) I'm always 2/10ths higher on a capillary reading that a vein reading.
So on my home checker I might be 3.2, but at the hospital by vein I will be 3.0
Lately I've been swinging from 3.1 to 4.7 on my home checker. I'm checking every day now... ( no insurance does not cover- any of it. )
( thanks for the nice compliment on my legs, friend! Now that I'm 48 - that's almost 50- I'll take those compliments when ever I can get them! With this livido, I suppose my legs could be very useful for playing chess? Checkers? 😉
I wonder if you have got high numbers of the "items" of the other two (aCL and anti-B2GP1)?l
Perhaps you have not tested negative the last times you have tested the antibodies. I do not remember if you have been sero-negative from time to time. I have always been very high positive for those two since starting Warfarin. I am triple-positive. They test me at least every year sometimes twice a year.
Today I had at my CoaguChek XS 5.3 in INR and then I have in the vein around 4.1. If I have a high number the difference is bigger. It is always lower in the vein. A discrepence between 0,1 - 0,3 mostly.
Is it always that very low difference between the veintest and the fingerprick-test (we say that in Sweden) at home ? That is practically nothing as it is also a difference in time I guess or do you take the machine with you to the clinic?
Did you swing 1,6 in one week? I practically never change my drugs. I may raise it with 1/4 of a tablet every 3rd day (I take 5 mg/day normally) but like you I test exstremely often to be able to keep the INR in range. I eat a lot of greens (the same amount) as I know we need them and you will not raise in weight. When on a restaurang I eat the greens when I come home.
I just went and looked at your profile this morning. You don't give much bio. Mine doesn't either- I need to do that. I introduced in my first post. I see you are from England and have a gait disorder and went to prof D'cruz in May. I really hope that was a fruitful experience! I also developed a very mild "something of the sort" - but very mild compared to what you describe. Mine was more like a transitory off balance sort of thing. I was diagnosed with non acute transverse myelitis due to sludging of the blood. But MRI was clean. It still can happen. Sometimes even when INR is high enough, so I think we need to add an anti platelet.
How did your appointment turn out? What did you learn? You can direct me to a post, if you posted it, so you don't have to retype it all out again... that's always very time consuming, I know. So thank you!
( the livido comes and goes with the legs. It's all over the arms also. The cold makes it worse. I'm lucky I'm really not heat intolerant as I read many here are. Living in Texas, this would certainly be unfortunate for me! I thrive in the heat like a Texas dessert lizard! 🦎🌵 I am, however, extremely cold intolerant. I have severe Raynaulds. Easy enough to fix. I always have a sweater at hand!
Very interesting about the transverse myelitist. I go back in November to see Professor David D Cruz. He thought my case was fascinating and said gait was to do with APS.Against it's getting better like it did when had it 9mths in 2015 so will see how I go.
A strang lot! Yes! You Brits always have just the perfect way to put things!
Please ask prof D'Cruz about the possibility of non acute transverse myelitis, if time permits. His thoughts would shed much light on this. Many APS patients are mistakenly sent to MS clinics. We knew I did not have MS, but I was sent to a MS specialist none the less because of the possibility of this transitory transverse myelitis, which Professor Hughes told me he had noted in early days with APS. I saw Dr Rebecca Romero with the UT health science center in San Antonio Texas. Her boss is Dr Robin Brey, a neurologist who specializes in APS and neurologic disorders. ( she is the chair of neurology at the University Health Science center in San Antonio, Texas. I also see Dr Brey as one of my consulting neurologists.
I have " too tight banding of leg reflexes "the number is 3) . If this will mean anything to you or your neurologists.
Ok- well there you have it!
But this is the least of my worries. ( DVT's are. And small brain micro clots/ seizures/ TIA's/ vision loss due to optic nerve atrophy, / clots to bowels/ massive abdominal surgeries.../ now our teenage son has flagged/ ... 😕
Maybe... except some of my really good docs are in SA, like surgeon and gastro. They work as a team... so scary. And Austin is 2.5 hours away. SA is only one hour. So- not sure. Also, my brother in law is getting ready to retire soon... so, there's that...
Kelly,
I hope you are documenting your journey with APS. You could write a book and illustrate it. You have amazing strength. I am in awe every time I read your posts and so grateful my case is so light. You are so knowledgable because you experience every possible manifestation at least it seems. I hope you are feeling better soon.
APS in HB
P.S. Try not to sit with your legs crossed. It isn't good for those deep veins. 😉
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