I've Re- clotted/ DVT/ I'm Ok!

* no PE, it's not large

*same arm, further down brachial/ bascillc

* what I've learned: it's been bothering me for a couple of months- off and on- veins swell, then go back down, then swell again. My primary doc said he was sure there was no clot. Perhaps my dysautonomia was " disregulating " the vascular system. Its possible both issues are happening concurrently and one causes the other is an ongoing theory I'm having. Im being investigated by a neurologist next week for this aspect of autonomic nervous system via tilt table testings- which I've had some years ago with flying passing colours.

*i had a horrible week leading up to this ( thank you for suffering through my posts re migraines/ rashes / auto immune suppression...) my INR kept crashing. I kept rashing.

* I didn't quite make it 4 months before re clotting

* my APS antibodies are not high- I do not have LA, only the other two. And they go sero negative at times. so it's not always indicative of aggressive clotting. BE CAREFUL. Let your doctors know- especially if you are in the USA.

21 Replies

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  • Sorry to hear this kelly. Perhaps more important now to try the heparin if the warfarin cannot be relied upon.

  • Thanks for the up date, you don't do things by halves do you!!!! Wishing you a speedy recovery. MaryF

  • Apparently not...what would be the fun in that?

  • That's the attitude Kel ! don't let it get you down !!

  • Ugh, sorry to hear this as I know you are at your wits end. I agree w APsnotFab time for the heparinūüĎć

  • Yes. My hematologist, Holahan- switched to heparin- Lovenox. Went from 40 to 70ml.

    ( I only weigh 108 pounds.) trying to dissolve the culprit.)

    But every 24 hours. It's not often enough. At about 10 hours after infection the migraine was back. (Day 7)

    This is a question for APsnotFab: are you reading this Lynn? My doctors are RETARDED. I'll fill you in when I'm not in migraine . Firstly they were not going to scan as I couldn't possibly clot on warfarin...I said no. then just increase the Coumadin... I said no. Then they said- go home and just continue with your Lovenox that you have if you fall below your target INR. ( this ER / A and E doc did not know about APS...) I said ... no, that's what I have been doing- the APS protocol is increased heparin i believe but I'm unclear in strength or frequency - I think IV... please call in a hematologist... ( I was in a small local village hospital- ) no hematologist on hand...

    The nurse was far sharper than the doctor in this matter. She called San Antonio and got ahold of my hematologist. ( who is NOT an APS specialist. I'm only his second patient... his exact words were when I asked how the other one was doing were,"it did not go well."

    He coached the ER doctor to administer the 70 ml of Lovenox. I felt this was very reasonable since it was not a large clot like the first one?

    "Daily injections" was how RX was written.

    How is it usually prescribed? It's not holding my symptoms for 24 hours.

  • Ok- we are playing amateur hematologists. That's always a nice, safe hobby! My ER doc said he was figuring Lovenox at 1.5ml per kilo of my weight. We just read that's for the 24 hour dosing. Otherwise, for 12 hour dose it would be 1ml per kilo weighed.

  • I answered your message

  • Hi I'm from Britain and like you clot through warfarin (coumarin)I'm aps as well. I am on heparin (dalterparin) injections but docs over here does by symptoms so for example the correct dose for my weight is about 12500iu to 15000iu over a 24 hour period. I am currently on 22500iu (three 7500 injections 1 every 8 hours) sysmptoms subsided and apart from one superficial clot that has too. They also use peak and trough anti xa levels to check dosage. Hope this helps x

  • Yes, thank you. I'll study this/ print for my hematologist.

  • Thanks for the update.

    Please see if you can be switched to Fragmin (low molecular weight Heparin), which is what I am on now, instead of Warfarin.

    Dave

  • I asked and my hematologist said no, as a matter of convenience and habit to him only. He said the were basically the same thing and not enough of a difference to matter. Dave,is this correct? I'm on 24 hour injections. I'm having break through migraines and my arm feels no better. I see him again in one week for a blood draw to see how I'm metablolizing. Maybe an adjustment will me made if it's off. Then every three - four months he said he will do a blood draw to check levels. That's it.

    Does this sound right?

  • Whats basically the same?

  • Oops-Good catch . I'm talking about the difference between Lovenox and Fragmin. Dave is talking about the switch from Wafarin to Fragmin. I really think between the migraine continuing on the Lovenox exclusively, and likely low INR ( or whatever you call it now that I'm not on wafarin) - and exhaustion- my brain function is not quite tip top. Sorry.

  • Hi Kelly

    Heparin, such as Fragmin, does not affect INR, as Warfarin does, as it works in a different part of the clotting cascade. So, as I understand it, if a person is on Heparin and not Warfarin, their INR would be around 1.0, if they had it tested.

    Dave

  • Hi Kelly

    I'm on 15,000IU of Fragmin, once per day.

    Dave

  • Your point regarding letting doctors know in USA is more real than you know...the instability/challenges in the healthcare system are heavily weighing on clinicians...they are financially penalized for "using" too much care at the moment....so whereas vascular studies (angiography), ultrasound, etc. might have been quickly ordered in the past, they are hesitant to order...instead barely even ordering labs like D-Dimer which can sometimes discover a thrombotic event...self advocacy is key....APS is confusing/challenging to MOST physicians in US-the key to getting to the right MD...then self advocating...the culprit here is NOT the physician, but an insurance system that "pays for reducing testing and care".....when you have "insurance clerks" making decisions about "preauthorizations" of need for testing against "standards of care" they don't understand, it is a tough situation to navigate...I have had LOTS of experience with this personally....

  • I asked for a d dimer and he refused. He told me because of clot f months ago it would be elevated. At that point I didn't even bother telling him my hematologists always ordered and it had already stabilized to normal. (<200 or 250) I can't remember which at the moment.

    If he's drawing blood anyway- why not just include that? It's pretty standard for a hematology patients, which lets face it, we are.

    You are very right, well said on all points.

    The culprit I was speaking of however, was the clot itself!

  • Hi Kelly in TX! I'm in TX too, just north of Austin. Found a great hematologist on a second opinion recommendation. He realized my first doc didn't check me for all things APS and found I have the PAI-1 gene mutation. We already knew I have high IgM antibodies and Hashimoto's so he put me back on Xarelto (first doc took me off and said baby aspirin would be enough!). His name is Darren Kocs of Texas Oncology if you are willing to drive. LOVE him! Best of luck!

  • I'm so glad you have found Dr kocs. I use Dr. Holahan in San Antonio. ( we live just 6 miles west of Kerrville on the Guadalupe between Ingram and Hunt.) my medical team is in in SA. I'll ask Holahan if he checked the PA-1 gene mutation. If he seems baffled, I'll see your doc. Thank you!

  • So Kelly what is Holahan doing for you?

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