Sticky Blood-Hughes Syndrome Support
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New DVT May 21 2017

Unbelievable. I am shocked with the vigor our bodies clot despit our efforts to stop the process.

We stopped the exclusive Lovenox regime May 8th. I suspect the clot was forming on the lovenox treatment, which shows all signs of failing me despite being at the highest norm of limits of the anti XA factor. ( 1.64 for my weight, 108 pounds. I was dosed at 1.5 mg/kg for 24 hour dosing. I asked my team at London Lupus center if there was a preference for 12 vs 24 hour dosing. The Andrew was no, as long as number was in range - meaning anti XA factor, which it was- as high as it could go and be safe. We could not increase it.)

Some people- heparin just does not suit them.

So this is three DVT's in 6 months. Twice on high intensity anticoagulants. Warfarin once and lovenox once.

They doctor wanted to air lift me to San Antonio...

After calling my heme in SA ( one hour away) my heme wanted to treat me at home. I'm still in continued migraine. INR still at 2.0 injecting lovenox ( 45 mg) to bridge.

My local doc wants to admit today here and use local heme and bump Coumadin up and break migraine. I'm going to wait and see what happens by late afternoon. 15 year old son in finals end of school this week ... husband out of town on business. My business administrative assistant is out of the country on holiday in Scotland in Edinborough ( a convention with a friend ) . I'm thinking I need to schedule these DVTs at better times in my calendar. 😳

25 Replies

How awful, I hope you go into the nearest place that knows what to do, sooner rather than later. You can always get them to converse between themselves. MaryF

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And I thought you said you were doing so well without migraine with high INR. So sorry to hear of this. Boy the hits just keep coming 😕 I don't know what to say , except I genuinely hope and want you to be better. My prayers are with you count on that🙏🏻


They got my INR set too low now. Doc over reacted to 4.4/ 4.5

American horror story.

But I've felt this DVT coming on for a while- migraine hit with a vengeance when INR tanked.

At internist now. They want me hospitalized.


Well hopefully they wil increase warfarin dose while monitoring an increased INR range to see you are safe? Hopefully that's the least they can do! Godspeed my friend😇

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Thank you so much. Always appreciated. Care out of SA I ( hope) will be coordinated with Kerrville s hospital.


Where is DVT this time? Are you n pain in this area?


Right arm. Same one. Basillic, but much higher up near under arm. Yes. Always very painful. This is how I know they are developing. Veins swell up and engorge all the way down to wrist and across back of thumb. I can post a photo . ?


Sorry, not Godspeed but God Bless, be well🤕


So sorry, Kelly. Hope they can get you sorted out soon.

At least if they try to put you on too low of an INR again, you can tell them this story and scare the heck out of them!


Oh no Kelly! Sending speedy recovery wishes to you. I hope your docs will now let you have a higher inr? X


Sending prayers and help.


I think sometimes we get in a loop. If you can just break that loop things may start to get better. If all else fails meditation and time to chill.

It has always been a big concern of mine. If you start to thin the blood, will bodies like ours try to over compensate leading to even more clotting just like a vicious circle?

For you Kellylin it sounds like there is no choice


Sorry to just now reply to this. I asked a similar question to my doctor at London Lupus center. The answer was, no.

My specific question was does the body get acclimated to the warfarin, so doed the body need ever Increasing amounts of it.

The answer was, you have a very aggressive case, that should have been a clue for your U.S. doctors that you were not properly anticoagulated.


Fingers crossed for you


Aww Kelly - take care my lovely, sending you a massive hug

Charlie 😙😙😙


Oh dear just read this. I hope things are improving! Ive just had a D-Dimer too - is it catching? I think you need to slooooow down and have a rest to allow your body to heal. Keep in touch xx


Sorry to reply to you so late in the game. I can never get consistency with US doctors to order D dimer. They are drawing labs anyway when I'm in ER ( that's A and E for you as you well know) so why not tag another order on it?

The answer? Well if you have a clot we know it will be elevated.

The problem: sometimes we are trying to figure out if it's new ( active) or older, the same one from only 5 or 6 weeks prior!

I have had a clean Doppler between clots so d dimer should be back to stable. ( below 200 or 250.)

Back from first clot in November the d dimer returned to normal. I still had docs not order a d dimer arguing the test would be elevated. I explained it had returned to normal. Still they would not draw. They would say- they scan will show us what we need. ( with an INR of 1.7...)

No help with micro clots to kidneys which I had in hospital last time. ( don't worry. The lovenox will take care of it.) no scan. No nothing. No IV heparin. Just sick pain.

Why and when do you get d dimers? My doctors seem very confused so I am also. And I'm sorry you had to get one. My d dimers are not catching, and I hope The medical establishment rmental retardation re: APS/ HS in Texas isn't either...


I also had a DVT in my groin whilst on Clexane and that was when I switched to Xarelto. While still working out the dose I felt another one coming and now have aspirin as well. Even though I'm religiously taking my tablets my double vision has become very annoying again-sometimes 2-3 times/daily. I'm just waiting to see if it improves before seeing someone again. I had an eye check and field vision test recently and it was fine so can only go back to Hughes for these symptoms. Otherwise I have the Cholesterol and blood sugar of a 20yo!! (if only we could sometimes turn back the clock!!)


This has not been the problem- I can't seem to stabilize. One day 1.9, 2.3, then 2.8,

The next 4.8!

I over re acted and halved my Coumadin. ( my heme wanted me to hold for one day.)

This is new for me. I think we are all going to have to learn together.

Several here on forum have now advised not to hold- just extra greens.. my heme disagrees.

I'm thinking perhaps I've become Lupus anticoagulant positive also. I hear that's not too terribly unusual. Before just only the other two.


Hi Kelly,

Have you thought of selftesting if you are going to be on Warfarin. The most important thing is to write everything you do every day on a Calender as to Warfarin and INR.

I only take 5 mg of Warfarin (2 tablets à 2,5 mg) so if I change 1/4 - 1/2 of a tablet that makes quite a difference. You know it takes 2 - 3 days to get the INR up but down with brusselsprouts in 15 hours (for me that is)-



Yes. I am self testing every day right now- I have the coag xs at home. Doctor is making sure I test each morning. I remember asking you how much time it took you to see a reaction from greens to tour INR reduction and you had mentioned 15 hours.

I've been in Princeton these last three weeks- and have had some problem. I'm at the Philadelphia airport right now waiting on a flight back to San Antonio. There is no way I could be living a normal life right now without the self test machine, or setting up an internal medicine doctor here ahead of time. ( my Texas doctor required it.)

Sure enough in the Princeton doctors office I was 2.9 INR so he made sure I injected with Lovenox. Then he told me he was not comfortable not having a hematologist on my case, do he got one immediately. A very good one! ( Dr Thomas Blom in Princeton New Jersey- has has quite a few cases. )

I am requiring 16/17 mg of Coumadin now daily. Most days 17.

He said I was on the aggressive / severe spectrum of APS. He has had two of his patients go into CAPS. He sent them to Rutgers hospital in New Brunswick, which has a huge heme department in hospital. Most of his APS patients are not very severe on the spectrum.


Do you mean that he means aggressive = need a high dose of Warfarin? I am tripple and with high titres that I thought was aggressive.

Good that you can take Lovenox injections. I test very often these days as my INR has been erratic and I do not know why. Need more Warfarin I think.

I eat 3 different vegs every day also.

Is there a difference between the vein- and the fingerprick-value?




I was at the Emergency Room last night myself for a DVT. I had a headache, had pain behind the knee and little above, got winded when walking, had swelling. I called my doc. He recommended a doppler. I hope you get the help you need because I was told in the ER that it was "chronic" the same DVT from December of 2015. It never goes away. It just changes. Sometimes it goes up the leg. Sometimes down the leg. They told me the valves in the veins are damaged and the veins are narrowed. But it never clears. Take care of it while you can so you don't get this permanent irreversible damage. I'm on Xarelto and a baby aspirin daily. They tell me there is nothing else to do for it. I am in awe of what you are going through! So much!


Yes, chronic vascular insufficiency? I thought that's what might be going on in my arm but my heme ruled that out. ( I still think my valves might be a little damages.) apparently the epithelial cell layer of veins are just being attacked .

So how are they managing that DVT? IV heparin In hospital, or with higher doses of Lovenox at home?

So sorry about that leg. I think a DVT in leg is harder to manager than in the arm. More gravity pools there. Always below heart.


Also APSinHB

I was just in Princeton NJ for 3 weeks. I have an internist there and he hooked me up with a heme, who scanned the arm. It was totally clear/ clean on the Doppler sonogram. Apparently these DVT's are resolving completely between clotting events. ( veins are compressing fine and flow is seen throughout length of veins. And I make sure they press! )


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