Sticky blood

[Pittstop]

Hi all,

I am 51yrs old female, and was told i have lupus anticoagulant ( sticky blood ).

Dr had me ln plavix 75mg a day, but i had a blood clot in right lung, so he put me on ELIQUIS 5mg 2 times a day..any advice??

[MaryF Administrator]

Hi there, yes you have Sticky Blood-Hughes Syndrome otherwise known as APS or Antiphospholipid Syndrome. You seem to be being managed on the correct medication. It will help us help you if you tell us where you are located. MaryF

[Pittstop in reply to MaryF]

Im in ohio usa, saw blood dr today, and he told me that my reg doctor can monitor me.

[Tammylola2012 in reply to Pittstop]

Hi, I too am on Eliquis, the same dose as you. I am LA positive and live in Kentucky. I have a hemo who diagnosed me again because I was sero negative for awhile until I had clots again. He told me the same as you. For me to stay on Eliquis for rest of life and he would monitor my blood disorder annually unless I have clots again. He said which would be highly unlikely on Eliquis. I am being monitored by my GP every three months for medicine refills and other issues. I have been clot free since February of this year.

-Noelle

[Pittstop in reply to Tammylola2012]

Thank you, i see my gp on tuesday, so i will see what he says. I am very happy for you ,5 mths no clots yea!!!!

It is good to know that eliquis is working so well.

[Tammylola2012 in reply to Pittstop]

Pittstop, all I can tell you now is to pick the best care possible for YOU. If Eliquis is working for you then stick with it. If after reading posts from others on here on a different regimen of treatment then choose that with discussion and approval from your specialist. I have been on both Coumadin and Eliquis for treatment of LA. I prefer Eliquis. Remember to educate yourself about your disorder. You are your best advocate and know when something is not right. I hope that whatever medication therapy you choose produces the best results. Wishing you well always.

[Hidden in reply to MaryF]

apsfa.org/apsfadrlistcen.ht... You are near one of the best Medical Centers,CLeveland Medical Center..Have APS specialists....and I also sent a link to APS specialists in OHIO best of luck

[Pittstop in reply to Hidden]

Thank you, problem is, im on disability, and it costs $45.00 to see specialist, compaired to $10.00 to see mu pcp.

[Hidden in reply to Pittstop]

Just a possible solution...if you go to a Medical Center(ie teaching hospital) and see a specialist ie Rheumatology/Autoimmune Department or better yet if one of the specialists is doing research you might be able to pay the lower co-pay or nothing..worth a call....

I know that in New York CIty/the top specialist /APS is also conducting research/clinical studies at the Hospital for Special Surgery APS department

[Fra22-57]

Is Eliquis as effective as warfarin or is warfarin not administered in USA

[Lure2 in reply to Fra22-57]

As APsnotFab says Eliquis is not licened yet for our illness APS.

Warfarin is far more difficult to monitor if you do not selftest and you have to follow the INR all the time and know well what you put in your month as we need K-vit for our blood even if it will lower your INR. Thus important to follow.

If you have a Doctor who do not understand APS so well (most Doctors do not) he will be afraid that you shall have a bleed (even if we know we do not bleed but clot from APS) if he let you have a rather high INR (which we need to have to feel well and avoid further clots) and therefore let you get one of the new oral anticoagulants that are not yet licenced for APS.

Warfarin is working very well to protect us and possibly the best drug for our illness if you can handle it. If i did not selftest I could not be on Warfarin.

Kerstin in Stockholm

[Tammylola2012 in reply to Fra22-57]

Warafin is still administered in the USA. However, and this is just opinion here, I think the newer anticoagulants are easy to monitor for hemo/oncology doctors. There is no adjusting doses weekly, and it keeps the cost of care down for Americans as our insurance is different here. It can get rather expensive when having weekly checkups. The risk for bleeding is decreased when treated with the newer meds and they are very close to discovering an antidote for reversal of Eliquis in case of bleed. They have already found one for Pradaxa. Also as much as I would have LOVED to self test when I was on Coumadin the first time, the machines are not so readily available and many docs here don't like to let go of responsibility due to liability issues. Our prescription/Doctor program is different in USA. We can not go to pharmacy with machine and show that our meds need to be adjusted and just given to us. Docs have to write new script, call or email in to pharmacy to get adjustments. A lot of red tape but just different here. Hope this explains how it is in USA. Just plain difficult...

😊 Noelle

[Pittstop in reply to Fra22-57]

Eliquis is used for serious blood clots, as i have had 4 in the past 4 yrs.

[ZRHONDA]

I have Factor 5 Lieden which causes me to form blood clots all over my body. I have to be on Warfarin for life. I also have Lupus SLE. Factor 5 is also known as sticky blood syndrome sometimes. from what I've read the newer blood thinners are more dangerous because there are no antidotes wherein warfarin can be treated with vitamin K to stop life threatening bleeding. The diet restrictions suck though

[ZRHONDA]

I have a home health doctor and nurses that draw my blood weekly. I was diagnosed and am followed by a heme/oncologist . I hate warfarin but feel it's the safest for me. The Lupus SLE is also hard to manage. I'm now with a new rheumatologist. So for it has attacked my lungs, heart and stomach. Just got out of hospital with pulmonary edema and congestive heart failure. From the lupus...

[ZRHONDA]

I have a blood clot in my right anterior carotid artery which is 100% blocked. Thank god all of my other arteries are wide open so I get enough blood to my circle of willis. They feel it's safer to leave the clot and continue with warfarin thetrapy to prevent further clots. My clot is 1.5 inches long. I hate having it. Small pieces break off and I've had one major stroke and many TIA's. I want it out but they said it's too dangerous. I can't find anyone to remove it. I was fine until I was 48, that's when I had a stroke and was diagnosed with Factor 5 and Lupus SLE. LUPUS SUCKS PERIOD!

[blods]

I had several large unprovoked PE's on both lungs July last year. Am now on Rivaroxaban (anticoagulant which does not have to be monitored)) for life and last week had nuclear and CT scans which showed only one clot left. I have been diagnosed with post PE syndrome - breathlessness, tight chest and fatigue so am going to have physio and pain management. I understand that Rivaroxaban is a new drug and only available in certain areas. I am in London where I think it was developed, so readily available.

APS is better in the Summer but the battle with fatigue is, for me, worse than anything with no hope of a 'cure'.

[GinaD]

When I first started warfarin and was first diagnosed I was scared. One of my doctors gave me the following little speech: Warfarin inhibits the uptake of vitamin K, which therefore makes it less likely that your blood will make effective platelets that clot too easily. so in your case, it makes your sticky blood less sticky. There are inconveniences with warfarin therapy as you must maintain a constant and steady diet regarding green leafy vegetables as well as nutrients that make the blood thinner, such as ginger and alcohol. And of course there are those blood tests. But the big advantage of warfarin is that we have been using this drug for decades. We know what it does and we know what it does not do. After years of experience we have not documented any increased risks of cancer or other long term chronic disease side effects, save those Vitamin K deficiencies which are a consequence of treatment rather then a side effect. and many of those consequences can be lessened – such as bone loss – by maintaining a regimen of weight bearing exercises, walking a lot, and making sure you eat enough calcium and get vitamin D.

On that same doctors advice, I kept a rather elaborate and perhaps overly obsessive daily log of food and activities so I could plot how different foods, exercise levels, sun exposure would affect my INR. I did note some correlations and after a couple of years I gave up on the log as I know longer needed it. I have now been on warfarin for 16 years. I was over range once and under range five times within those 16 years. I take no other medications. The monitoring of my diet and the blood is an inconvenience – but no more mini strokes! Warfarin has become my medical best friend!

And, as noted above, there have been no clinical trials I have heard of that have been published which demonstrate that the newer generation blood thinners such as Eliquis are effective in treating Sticky Blood Syndrome. The clotting cascade is very complex. I know this, not because I understand the cascade, but because I've looked at flowcharts published online – there are dozens of dominoes in that reaction. Exactly which "dominoes" anger our immune systems and result in Sticky blood Syndrome clots are not yet fully understood. So, it is quite possible that blood thinners that work for people who have a sticky spot in there circulatory system – such as a valve replacement in the heart – are not as consistently effective with Sticky Blood patients. Doctors who do not specialize or have experience treating Sticky Blood Syndrome may not appreciate these distinctions. We all know that in the US, pharmaceutical companies and their representatives have been sadly effective in convincing doctors to prescribe their latest and most expensive drug, even if those drugs do not have an established track record in treating a certain condition.

so yes, I echo the advice above that you find and enter into the care of a hematologist or rheumatologist who has experience in treating our disease. A website called APS action has a list ofrecommended APS experienced doctors.

[Tammylola2012]

You are correct about the ads on TV. There is always a "new" drug to treat something not just thinners. They then list numerous side effects that usually take up the longest part of commercials. We also have attorney ads that try to get you involved in class action lawsuits against drug companies and manufacturers. It is crazy right now in US with someone wanting to point the finger at someone to take responsibility. So, not only can you join class action lawsuits against companies but you can sue Doctor treating you for condition. The cost for liability insurance is through the roof in US. I know when I was pregnant my OB/GYN did both. He was sued after I had my kids and he dropped OB because insurance was too high of cost because he was considered "high risk"

[MaryF Administrator]

Yes I agree: apsaction.com/ A lot outside of the UK find this useful. and the advice of those from the USA who already have found a doctor who understands the condition. MaryF

[Michielson]

I not only have Antiphospholipid Syndrome (APS) aka Hughes Syndrome...but have also been diagnosed with Factor V Leiden, Elevated Factor VIII, Activated Protein C, Hyperhomocysteinemia, and Mixed Hyperlipidemia. I have been on Lovenox, but it was too pricey...so I was switched to Coumadin. Not a fan of it, but it is cheap. Looking to go on hydroxychloroquine, to help with the fatigue.

[AnnNY]

I have seen an APS specialist in the US who has worked with Dr. Hughes, and who has been recommended by him. She is very research minded. She has prescribed Eliquis and Pavix for me. I knew that she had prescribed them to other patients before I had my appointment, so I didn't discuss why she was using this combination, but she obviously has experience using them. I have the MS like version of sticky blood, and haven't had a a miscarriage or a blood clot that I know of. Sometimes research doctors know about research before the ink is dry in any publication. Also, they have experience with drugs their patients. I also know she has used these on patients with serious clots. I am very happy with the results, and that I can eat anything green that I want, and I don't have any side effects that I know of. Also, she told me a very good drug is coming out soon that will block the action of Eliquis in case of a bleed. Anyway, some very knowledgeable APS experts are using Eliquis in the US. I expect some published research will be coming out.

[Tammylola2012 in reply to AnnNY]

Thank you for the information you have posted here. I look forward to seeing publications about Eliquis treatment and APS. I have had clots and LA positive. I suffer no side effects either. I love my greens when I want them not on a consistent daily schedule. It was so disheartening having to go weekly for INR checks and me being the youngest one in the room. I would try so hard to stay stable on Coumadin and feel so defeated when the results came back not in my favor. Thank you for your insight, I appreciate it. 😊🤗

[Pittstop]

THANK YOU ALL FORTHE SUPPORT AND INFO YOU HAVE GIVEN ME👍

[Edva]

Count your blessings. I heard that a short time ago my doctor's nurse would do the finger stick, the same as the visiting nurse when I first started on Warfarin. Now I got to the building that houses my doctor's office and have blood drawn in the lab by a phlebotomist. It is a needle that goes into the vein, more expensive and uncomfortable. I had a PE after surgery last summer and because I had been treated for a clot 57 years ago a couple of weeks after having a baby, I didn't dare not go on Warfarin for the rest of my life. I miss my green vegetables and have found there are many other foods with Vit. K that I need to watch, such as vegetable oils.

[GinaD]

Thanks!

[Pittstop]

Becareful of constipation with morphine, make sure you take stool softner, i had left knee replacement 5wks ago, and i was backed up for 8 days because of morphine.

[Pittstop]

So i went to water park with the kids, and even with sunblock, im so sun burned, must be from being on blood thinners..never burnt this bad before. Outch!!