Menu
Have an account? Log in
Health tools
    Health topics
    Search Sticky Blood-Hughes Syndrome Support
    Sticky Blood-Hughes Syndrome Support

    Yet Another DVT - They Just Keep Forming. Averaging one about every 7 weeks now.

    Yet Another DVT - They Just Keep Forming. Averaging one about every 7 weeks now.

    Something is so horribly wrong. My INR has been perfect. 3.5 to 4.3. I have about 2.5 inches of non compressible brachial deep vein in right upper extremity. I have known for about 4-5 days it was re forming- I could feel it building.

    The emergency room doctor ( our small town.) did not have access to a heme he knew. My INR by finger prick was 3.6. He said he could put me in hospital in San Antonio, or I could inject with Lovenox at home at come back Friday and re evaluate then.

    He said lovenox at 70 mg at 1.5 mgs per kgs ( I weighed in at 110.)

    I'm not sure... he said he could manage it- come back Friday and rescan arm. If it wasn't better - then hospital in San Antonio. Then we would call hematologist.... he didn't even know to check my platelets. I suggested he should do that before the lovenox... my counts was ok. 240.

    My husband- who is out of state right now- couldn't be reached by phone.

    He just called. He thinks it's insane to have an ER doc manage a fairly severe clotting anti phospholipid patient. This doc admitted to never having ever seen and APS patient.

    Guys- is it ok to have an INR of 3.6 and inject with 70 mg of Lovenox?!?! OMG!!! I'm at home ALONE!!! But I also have a 2.5 inch segment of non compressible vein showing no blood flow. ( $&"&€#!) Please feel free to insert your favorite explicitive in preceding parentheses.

    Read more about...

    44 Replies
    oldest • newest

    Kelly, my prayers are with you.

    1 like
    Reply

    My GP say's you can't have a DVT when you are on Warfarin. My INR is between 3.5-4 and I have often felt that it was possible. Thanks for the information. I hope things turn out ok for you.

    Reply

    Approx of 1/3 APS patients do, unfortunately. I believe I need an antiplatelte added. My docs have told me this, too, by the way...

    Where do you live? USA?

    1 like
    Reply

    I live in the UK, Those figures are quite frightening .

    Reply

    If you fall in the 1/3 category, you will know pretty quickly. There are statistics on it. I think you will reclotted in 24 months or so, if I'm remembering correctly. ( it's calculated in " patient years... ) I can look up the statistic my rheum gave me tomorrow and quote it exactly correct if you'd like. Let me know. It's easy to retrieve.

    Reply

    I have proved your GP wrong over and over. Now I am on Dalteparin injections to deal with a DVT again. Looking for alternative options to Warfarin in the future; not wanting to stay on Dalteparin long term if there is another option.

    Reply

    You also have a current DVT?

    Reply

    Yes. 8 (sort of lost count??) in the past 11 years, besides the first clot which lead to my diagnosis (APS), I have developed DVT's while on warfarin. Always in my legs. Now I am trying to maintain and heal through chronic venous insufficiency in both legs, which is very painful.

    Reply

    Oh goodness. This is a tough one. Harder to manage leg DVT's than an arm one. Arms are less likely to flip a clot, and less likely to have the vascular insufficiency.

    1 like
    Reply

    How are you feeling now Kelly and is someone checking on you?What does TOS stand for?

    Reply

    My hematologist NEVER CALLED!!!!!!!!!!

    I called my internist. He's livid. We are wanting to switch hematologists anyway.

    My husband suggested catching a flight early in the morning to Princeton to see my hematologist there. I called his office today at 4:30 to see if I could do that- ow what I could do. He said- send me the report. Do not inject Lovenox with INR this high. ( you are in range.) when I read report In the morning I will call you with a plan. Get to your internist- we will make sure base lines are good- I should be able to handle you via your internist at home. I think he means... at home! He said arm DVT's don't flip as often as leg DVT's. I see internal med doc at 11:00. Also getting a new hematologist.

    1 like
    Reply

    Thoracic Outlet Syndrome.

    Reply

    Aww no Kelly.If I were you I would feel safer in hospital and not on my own. Something is not right to keep having DVTs. Hope you can get hold of your husband soon.

    Reply

    Oh Kelly, Im sorry your going through this, I cant help much with the warfarin info, as I cant take it. I can tell you others have got clots whilst on it, so your not alone!

    I have to take a trio of meds, anti-platelets & anti clots. Whilst on this last year, I developed a clot in my leg! Like you, went to hospital and got no reassurance that the doctor knew what he was doing with an APS patient. My normal dose of clexane was 60ml per day, I increased this immediatly to 140, I took this high dose for 3 days. Put a call in to my specialist, (who took a few days to get back to me) and was told I had done the right thing and right dosage - phew!!

    My concern for you is you say no blood flow? That to me needs urgent attention and not leaving it to Friday. Presume you have injected the higher dose now?, this may dissolve the clot, which is normal procedure, but us APS patients need more looking after.

    Have you got hold of your husband now? You shouldnt be on your own, as stress and worry will take over.

    I presume your home now, I would certainly advise if you get any worse or lose any feelings in your lower arm or hand you return to the hospital.

    I wish you a speedy recovery xxx

    1 like
    Reply

    If you don't get any better, you must return to the hospital swiftly and take your husband with you, and yes push for an antiplatelet. I do hope you improve. I hope that doctor goes away and reads up on the condition. MaryF

    3 likes
    Reply

    I called my hematologist's office first thing this morning and filled the nurse in. The doctor will be in the office at 11:00am, so in two more hours.

    I told her the Emergency room doc told me to do the clexane ( I think this is what you call our Lovenox/ exoxaparin) at full strength - 70 mg for my 110 pounds. She said- but you would never do that while on the Coumadin. )?????????

    I'm confused here. Ive always done that while on the Coumadin before- but usually ive been a little sub therapeutic. Usually my heme says to inject at 70 if in 3.0 or less while in active clot.

    But I've never been in active clot with a perfect INR...so this must be why she's telling me this.

    I told her that I've been studying on my own. ( I told her about patients day videos) and professors Beverly Hunt and Hannah Cohen. I told her Professor Cohen recommends Persantine ( dipyridamole- quite an older drug) ) in some situations such as mine appears to be.

    Note: video: "Q And A Memory Loss HS APS is there a link w/ dimentia or other drain disorders HSF patients day " may 2015

    *It's only 4 min long- but really the important info is the bit about addressing the clotting cascade from two routesa warfarin ( extending clotting on linear time) and dipyridimole ( anti platelet )

    I think it applies to many of us.

    My entire family- husband included- is in Veil Colorado on holiday. It's my father and mother in laws 60th wedding anniversary. I've become so "clotty" I could not be so far from my docs right now. They were very sad but understood. We are also Swiss citizens- so we even have family in from Switzerland. Everyone is sending me pics and videos! So I do feel I'm there with them. I'd like for my husband to stay there if I can manage it here. I own my own business and have a wonderful lady who is every bit my equal ( I don't like to use the term employee- she is more like my manager- literally! I think she manages ME! ) who can be my side kick and help if I need. I just hate to ask... occasionally, if I'm in migraine - low INR- she has driven me to dr appointments. Driving myself in city traffic of one million population with migraine is not safe. And she will not let me do it! ( my husband is most often out of town Monday through Thursday running the other company) So she knows I can be in a bad predicament. I have her come on in to my appointment with me and hear what docs say-i don't think I could keep her out if I tried- that way if I miss something ( very easy to do in a migraneous state) she's got it. She takes the notes at these particular appointments .) She's wonderful!

    Lately with INR up I'm great! No migraines- so I'm actually doing much better all in all with warfarin. Just clotting like crazy, unfortunately.

    1 like
    Reply

    I'm sorry to hear of ur difficulties

    My inr range is 3.0-4.5 but we try to keep it 4.0-4.5 as under 4 I'm so ill.

    When I am 3 I have to inject.

    Maybe a constant higher range for you is in order? Obviously the inr u have is not high enough for ur body.

    I wish u lots of luck and hope someone listens 💋

    2 likes
    Reply

    I feel my ," sweet spot " is 3.7- 4.2

    I've 4.2 can give me a little head ache. I've gone to 4.7 and a definite headache. ( not the same as a migraine from INR going too low. That happens if INR goes below 3.3 or 3.2.)

    I really think my INR is perfect.

    Truly I think I just need an anti platelet. Remember last week I told you I though you might need this too? I referenced a you tube patients day video with prof Hannah Cohen? She talks about this benefit for some patients. It's called persantine.

    1 like
    Reply

    Most doctors as they progress through medical school are exposed and warned of the dangers of bleeding out on warfarin. And this is because the vast majority of patients on warfarin take it because they have a sticky spot and there circulatory system. We have sticky circulatory systems. If you are continuing to clot then your blood is not thin enough. And the thought that an INR of 3.1 might still be too thick inside the body of an APLS patient is a concept that most doctors cannot wrap their head around. But obviously your current dosage is not working. And in the long term, your hematologist should address this.

    But in the short term, you need to focus on coping with this particular clot. Safely. While your husband is away, are there neighbors who might check on you every hour or so? I found hospital stays to be so gruesome that is hard for me to suggest that anyone should be there if home is an option. But in this case that may be where you should be.

    A stressful situation. Thoughts and prayers are with you.

    1 like
    Reply

    Hi Kelly,

    Agree with all the above very good advices from friends here.

    Take good care!

    Kerstin

    Reply

    Hi Kelly,

    Can you selftest every day now at home and are you sure the difference with the vein-value is only 0,2?

    Ask the fantastic "Manager" of yours if she could stay nigh when your husband is abroad.

    Kerstin

    1 like
    Reply

    I self test every day, I have the coagucheck xs roache at home. I am testing every day right now to establish a pattern of Coumadin mg. My heme is pleased with pattern I've established and said to go with it. The pattern is three days of 16 mg than on the fourth 17. Then three days of 16 mg then on the fourth day 17. Just that little bump on the fourth day does the trick.

    I have a new batch of test strips I have not checked against the vein value. You make a good point.

    This reminds me - I have a list on the coffee table of things I either need from heme or items to discuss .

    I'd like standing orders at our hospital here in my town to do a vein draw so when ever I need, or get a new batch of test strips, I can bring my coagucheck in with me and check it against the vein value. Maybe even when it gets too high, like you say, and see if it's a greater discrepancy.

    Thank you for mentioning this.

    By the way- I watched a video last nigh from a professor- American- perhaps associated with Mayo- lecturing about the revised Sapporo criteria. (?as painful as some aspects were to watch...)

    It was very informative, but I must say so much was academically over my head. Way beyond my liberal arts education!

    The man is clearly brilliant. He's just sadly going by American standard- but I did learn a lot.

    He spoke about the additional antibodies - they are linked to prothrombin antibodies- and particularly lupus anticoagulant . So if I understood it correctly- there is a link between patients who test for these additional anti bodies and who flag for Lupus anti coagulant. Therefore, I might be now positive for LA, but because I'm on warfarin, I can't be tested. I'll look look at the totle of this lecture- and let you know. It's a technical piece- but I think important.

    Reply

    Ok, Kersten. It's a you tube video about an hour long. Put out by Gran Rounds / the University of Washington, Laboratory Medicine

    The Antiphospholipid Syndrome

    Dr Michael Linenberger/ Associate Professor, Department of Medicine/ Division of Hematology

    Reply

    Sorry to hear this news. I agree with you that you probably do need to mix in an antiplatelet. Here in the U.K. They often use clopidogrel which is better than aspirin.

    I note that you constantly use clexane is dalteparin not available in the USA? Prof Hughes tends to put his patients on that although they say there is no difference really between any of them.

    It's possible they need to take you off the warfarin and put you on a heparin infusion to get rid of this arm clot as it seems to me it never really gets resolved hence its reappearance constantly. Either that or perhaps you do have a TOS which may be responsible. When's that being checked out?

    Reply

    I saw a hematologist in Princeton NJ in late June who wants me investigated for TOS. I saw a vascular surgeon last week and am waiting for a call from his office to set up the test for it. ( well done, Ms APsnotFabuloso!)

    Likely the initial clot just wrecked the vein so it's roughed up and ,"grabby" and blood is " stick" so...yeah.

    I asked my heme about fragmin vs Lovenox. I told him prof Hughes tends to use fragmin over Lovenox- so there must be a reason why. He said is so similar it really doesn't matter. He said it's like the difference between ,"coke" and "Pepsi."

    He said honestly it probably was because a pharmacy rep was pushing Lovenox so that hospital ( Methodist system in San Antonio) started using Lovenox. The hospital he's affiliated with used Lovenox. He said he's more comfortable with it- so he rather stick with it.

    He said he believed St Luke's Down the street from Methodist tended to use Fragmin .

    ( San Antonio medical complex is huge- several large hospitals all grouped together- with a few large university trauma hospital also- )

    I told him that was fine.

    Reply

    Funny he says he's more comfortable using Lovenox! Obviously Prof Hughes is the same for Fragmin. He writes private prescriptions that get taken to wherever the people chose to take them so there is no use for a rep to push there! Your right it is a bit like coke and pepsi and Ive asked Prof Hunt if there is a preference for our condition and she says not. Sooooo, its up to you and whatever YOU feel comfortable using. I think the key is that the dose is correct! I also think for you at the moment its the combination of meds that they need to get right.

    Reply

    I do get perfectly clean scans between clots, by the way. I make sure the person scanning the arm is not shy about really compressing that vein. ( as to make sure there is no residue clot. ) The vein is too small- ( damaged) but clear. No sign of Clot at all.

    My hematologist in San Antonio never called me back today. At all. His nurse did say this morning ( when I called at 8:17am) not to take any lovenox at all with INR of 3.6. And that dr Holahan would advise when he got into office.

    I called Princeton heme starting at end of day. . He said fax report. He would advise me tomorrow. - after reading report. but no lovenox- this arm is feeling pretty terrible.

    I think I'm going to have to get a new heme in San Antonio.

    1 like
    Reply

    Why is clopidogrel better than aspirin?

    Reply

    This might help -

    drugsdetails.com/aspirin-vs...

    Reply

    They are both anti platelets so make the blood less sticky. Clopidogrel or Plavix as its sometimes called, has the advantage or staying in your system longer plus it does not have the irritant affects on the gut that aspirin can have. It also can sometimes be tolerated by people who are allergic to aspirin. Its generally thought that aspirin is used first and then if that is not affective move on to clopidogrel or even mix the two before moving on to something like warfarin.

    1 like
    Reply

    Yes, we take the prescription to what ever pharmacy our health insurance has a contract with. For example, Walgreens ( is a sister company with your Boots) is contracted with our Health ins. So my heme could write fragmin or clexane. It makes no difference to me as a patient. It's up to me what pharmacy I use at that point.

    Reply

    So sorry to hear this Kelly. My doc has me on 1mg/kg dose every 12 hours, she told me she didn't feel comfortable with the 1.5mg/ kg once a day because of my clotting history. I no longer am on any warfarin but had been up to 16 mg daily with very little vit k intake, that was my concern. Something to think about. I hope things soon turn around for you🙏🏻

    Reply

    Kelly check out RAPS AF trial, similar to what you're going thru and patient switched to Riva? Hmmmm

    Reply

    Maybe this is why it is working for ozchick?

    Reply

    RAPS AF? 😂

    ( when your disease is more gangsta than you!*)

    * which, by the way, it actually is.

    Thanks , Cindy! I'll check it out.

    1 like
    Reply

    So sorry to hear your life sucks right now. It's hard fighting for treatment when you're not feeling great as well as trying to educate the doctors as well. I had clots on therapeutic twice daily dose Clexane which was when I changed to Xarelto + Aspirin.

    Reply

    How long ago did you make this switch? ( and I'm so glad you found a ,"magic combination" that works for you. )

    1 like
    Reply

    After PE's, I was about 6 months on Warfarin, then got DVT so changed to Clexane and after 12months another 15cm DVT in groin so started Xarelto 20mg (which BTW does have reversal agent now as well as Dabigatran) and about 6 months after this I was away and *think* I had another DVT (but not nearly as painful or swollen as the first one. By the time I got back to the doctor (was starting to avoid them!) and had another scan, it was unclear what had happened. I did have a small clot on spleen (MRI) and since that time (Aug 2014), I've had the aspirin 100mg added.

    The only symptoms I get now are a bit of double vision when I'm tired and a bit of brain fog from time to time that I can live with. Otherwise (fingers crossed!) I feel pretty good.

    As you know-there is no one cure all and what fixes me may have dire consequences for others.

    1 like
    Reply

    Waiting with baited breath, how'd it go Kelly?

    Reply

    Thank you, Cindy- for support! Not sure yet. Got scanned again today and it's same occluded the entire length of brachial. No flow what so ever. Hematologist in San Antonio hasn't called. My internist was going to call him directly yesterday afternoon. They were going to consult surgeon if heme gave ok. I haven't heard from internist. It's now after 5:00pm obviously on Friday.

    No one has a clue what to do. If I weren't an APS patient I would already be in surgery.

    Reply

    So if it's occluded they want to use a catheter/cannula infused with activase to go in and break up clotted brachial area? Do i have this right? And if so then how are they going to manage reperfusion?

    Reply

    Did you see that I replied to you with the exact name ? When you asked? It's EKOS . See if you can find your question and my response. I answered today-

    Reply

    I saw it but am not familiar with it so that's why I posed this question. Do they have a plan if they re open it? I wouldn't think this damaged tissue would just be "ready" for new blood flow without some type of help. Hopefully they have a plan... I'm on your side🤔

    Reply

    Oh my goodness, all those clots are very scary. I hope things settle down for you soon

    Reply

    You may also like...

    © 2018 All rights reserved.

    Company

    About Us

    Jobs

    Business Model

    News

    Blog

    Communities

    Directory

    Start a Community

    Community Guidelines

    Community T&C

    Support

    Help Centre

    Users T&C

    Privacy Statement

    Security Policy

    Cookies

    Languages

    English

    Español

    Português