Sticky Blood-Hughes Syndrome Support

Advise on changing drug

Please excuse my spellings i am terrible and have no spell check 🙈

Hi! I have been diagnosed with Aps and test possitive for lupus for 4 yrs now. I had a stroke after having my little boy as i was undiagnosed with this condition. I am on warfrin and hydrocloquine now. I self test at home to collect my inr and am very confident in dosing my wafrin. I do check my machine with a vein test every 2 mths. I have always found it hard to keep my inr stable even when taking all the nessasary procortions to try and keep it stable. I am at the moment finding it REALLY hard to stop it either jumping up or falling quickily and this is making me feel rubbish. I get headaches, muzzy head days, feel very tierd and life feels very hard.

I am seriously considering insisting on changing over to another drug as a trial. Please if u have any advise or info on this i would b very grateful for. I am seeing my consultant for my aps on wed and really feel i need a chance to try something else. My hospital lab who i check my machine with are at a loss in helping me either.

Any help would b very much appreciated

Thank u!!!!!!!!!!!!

31 Replies
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Being as you have had a stroke, unfortunately they will not allow us on the other oral anticoagulants, it’s frustrating, I know, see my profile.

You can ask about being switched to enoxaparin. That’s what I did. It has changed my quality of life by leaps and bounds. I take injections every twelve hours which I know sounds horrible but for me I looked at it as a diabetic would look at insulin: it keeps me safe and I can enjoy my life again.

I was never really one to rely on food for much except for body fuel but after I got this disease I realized a lot of social interactions are around food and drink and not knowing how much vitamin k I was eating I wasn’t eating much. I lost a lot of weight, not by trying but by being very afraid to eat anything.

I now eat what I want when I want but keep my weight the same. I do this because the lovenox is weight based. I weigh myself daily and tweek back on food intake if I need to cut weight.

This is just my opinion but it has worked for me. As always you need your Drs approval but of course you would have to have that for em to give you a prescription for it anyway.

I hope this helps, keep me posted please. Where are you located? Best regards, Cindy in NJ, aka, wittycjt here

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Thank u so so much for your msg. It is so lovely to hear that u have gone through a simular thing as i am going through and come out the other side feeling possitive. I am such a possitive person but its all starting to get me down and effect my life in many ways. I have had a brief convo with my doc about switching and the stroke thing always comes up but my thoughts on it is that i wouldnt of had it if i was taking blood thinners. Im obviously not a doc and would of corse do as they say but im really feeling unsafe the way i am going and the quality if life is rubbish. Sorry to rant to u!!!!! And thank u very much for your msg. I live in Bristol in England.

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When I was diagnosed in 2001, I was then told that arterial clots, (as in strokes,) indicate that the confused antibodies are not only binding to platelets, but also to the linings of capillaries - and this requires specific treatment. What works for people treating possible venous clots -which represent the majority of people taking blood thiiner drugs, and also some APLS patients, will not keep us safe.

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I could’ve written this post today. I’m in the exact same position as you. I self test and dose myself but I’m not stable.

I tried twice daily fragmin injections with an aspirin but unfortunately for me they didn’t work as well as the warfarin and I started to have severe neurological symptoms.

I’ve had a hissy fit (again!) and wanted to insist on the newer tablets but I know they’re not approved for people like us who have arterial issues and need a higher INR.

I learned just today that my unstable INR could be due to my dose changes being too dramatic and I need to adjust more slowly with possibly 1/4 and 1/2 tablets. I have learned this from a fellow APS patient and not a Dr!

I am now going to try and manage my INR in a slower more controlled way.

I know it’s so hard living with this though and I wish you luck whatever you decide.

Kelly

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Hi Kelly!

Thank u so much for your msg!!!! It is so frustrating!!! I alway change my dose but 1mg if it goes up or down so that it should fall or rise slowly but at the mo this isnt helping. I didnt know u could get the smaller that 1mg tabs so that might b helpful to me too so thank u.

Its so hard!!!!! I really hope u feel better very soon xxx

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You can’t get lower doses but you can cut the tablets in half.

Hope you’re feeling better soon too!

Take care.

Kelly

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Ok thank u Kelly 😀

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U can get 0.5mg tablets, for when u need to go up and down by .5

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Not from my doctor! I use a tablet cutter x

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My Warfarin tablets are blue and I cut it in four with my thumbs.

Kerstin

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Should be able to get them from any major chain pharmacy, I do, and probably independents too. Your doctor just has to write the prescription, by hand if necessary because someone won't put it on some computer list - it's hardly complicated to write 500microgram instead of 1mg, just laziness on the part of doctor really.

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I think this disease is better managed when you find something that you personally feel comfortable with and which allows you to not stress too much and worry all the time.

People who are LA positive do seem to have a more difficult time controlling their INR. I switched over to LMWH and for me it gives me a steady controlled medication. I've been injecting for 6 years now and frankly don't have any intention of changing unless something comes along that offers the same amount of stability. I was told that if I had increasing symptoms they would add clopidogrel rather than aspirin but so far that's not been needed.

I also think it's important to make sure your Thyroid is tip top as it can affect every organ in the body when it's not working properly. Minerals are also important too so it's just getting as close to all other things working as they should too.

No one can tell you what to do, if you have had an arterial clot then normally it's warfarin or LMWH only or you need to find a combination of other antiplatelets that might work along with your main anticoagulant. I hope you can find something that you feel happy to live with.

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Thank u so much for your great msg!!!! I defo am feeling very unsafe at the mo and although i have never had a steady inr i have always been able to b in control of it a little bit. At the mo it feels like it is defo in control of me which makes me worry.

Thank u again for your msg

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Being in control of you is the most important thing in being able to remain sane in my opinion! You can get all the best advise in the world but if it doesn't work for you it has no value.

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This is very true. Thank u for your help. U have given me the extra push that i needed to help me be strong when i go to my appointment this wk. Thank u!!!!!!!!!!!!

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Hi gemgemz,

APsnotFab has given you an alternative and I also wonder if you are Lupus Anticoagulant positive.

In that case it can be difficult to selftest and to keep the INR steady. At least you need a special nurse from behind to assist you who knows us and how we react when we change our Warfarin-drugs.

I manage as I have great help here in Stockholm but not so many have that safety.Then it is better to change to LMW Heparin(Fragmin) as APsnotFab suggests.

Best wishes from Kerstin in Stockholm

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Thank u very much for your msg 😀

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I am sorry you are having a very difficult time.

Just to clarify, when you say you test positive for lupus, I assume you mean the lupus anticoagulant which is not a test for systemic lupus erythematosus, but a complicated blood clotting test.

The name is unfortunate because it confuses not only patients, but some doctors!

I hope you will be able to stabilise your condition and I would suggest talking with your specialist

With good wishes,

Ros

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Thank u!

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Hi, are you under a specialist who understands Hughes Syndrome/APS. If your Warfarin is not suiting you, it must be reviewed. There is also a very good book, Eat on Warfarin by Kath Atkin which is very good. Also it is vital to check B12, D, Iron and also your Thyroid on a regular basis to make sure nothing else is going on. MaryF

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Hi Mary,

I know you have talked about that book before. Does she speak about Warfarin and us with thick blood and Lupus Anticoagulant also?

Kerstin

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She does have the same disease yes. MaryF

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I will try to get that book.

Kerstin

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Many thanks for your msg. Yes i am under a doc who is in contact with the london docs. Im hoping he may liase with them after my appointment.

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As Ros I also wonder if you are positive to one of the antibodies they test for our condition; the Lupus Anticoagulant or to Lupus (the illness SLE)? Important to know which one you talk about.

Kerstin

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Im not sure sorry. I will have a look on my notes. I was just told i test possitive to lupus but show no signs that it is active at the mo. I take hydrocloquine(cant spell) to help keep it that way??

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If you are going to see your Doctor tomorrow ask about if you have Lupus (the illness) or Lupus Anticoagulant (the antibody they test for a diagnose of APS)?Ask for copies of your bloodtests to take home.

Good Luck!

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Yes i will do that! Thank u 😀

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Well tomorrow’s the day please let us know what he says, Cindy

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I will. Thank u again!

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gemgemz, so what happened, Cindy

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