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

    I started Warfarin in March and live in New York. I don't love the testing and diet restrictions. What are the generic alternatives?

    I am becoming aware of Fragmin through this site. Is Fragmin a generic form of Heparin? Are there any alternatives in generic form that do not require testing and diet restrictions? I have APS and am being tested for Lupus. I had a stroke in March. I am ambulatory, initially lost my speech but have almost totally regained it.

    Read more about...

    32 Replies
    oldest • newest

    Hi,

    You have been on warfarin less than 2 months. I took at least 2 month before warfarin had a total effect on me.

    I am not a doctor but I think I have heard others that are taking Fragmin without testing and diet restrictions. I have thought about it myself as I have also Lupus Anticoagulant but I have now a Coagucheque machine and that makes my life much easier. I test every second day and can keep my INR in the therapeutic range.

    I also eat K-vit vegetables each day. The same amount every day.

    Take care and good luck from Kerstin in Stockholm

    Reply

    Thank you so much. I understand here that I have to wait 3 mos on Warfarin to get the Coagucheque Machine through insurance. I think that's a wise decision. I honestly have not got the Vitamin K veggies straight yet but am eating a couple of pieces of broccoli and cauliflower every day. Do you regulate your own meds and then check in with your MD? It's all so new but what a wonderful site this is to learn from and share. Thank you so much Kerstin. Have a good day.

    Reply

    I do not know how it is in the US but here we can have a Coagucheque machine for free (at least if we live around the Stockholm aria). I could not have stayed on warfarin if I had not had this opportunity. Even the nurse (specialized in INR and also APS) has said to me that this was my only possibility to stay on warfarin as I have also Lupus Anticoagulant). They have realized here in Sweden (we have a Health care system that is we do not realize how lucky we are sometimes) that it cost more if the person has a Stroke or Heartattack. There are few doctors that knows APS here so we have to fight for our diagnoze like you.

    I am waiting for a drug that works (like warfarin that has an anti-dot) but without the possibility to bleed. Warfarin is a dangerous drug but if you manage it it is the purest and straightest drug and well recognized and tested for so many years.

    Make notes, CONSTANCY what you eat. I never change my doze in tablets after selftesting but I change the amount of K-vit rich vegetables (broccoly and brusselsprouts mostly) instead of changeing my tablet intake. It goes faster and is easier.

    I have my doctor (hematologist at our hospital in Stockholm) that knows me after a long period of time and many warfarin-tests and a nurse (specialized in warfarin and who knows me). I now take cheque at the lab very seldom. I call them if I change my warfarinintake but I do that very seldom as you understand after having this Coaguecheque-machine. I change my intake of K-vit rich vegetables instead.

    That was a long one but if I can help you I am lucky.

    Best wishes to you from Kerstin in Stockhom

    Reply

    You helped me a lot. It sounds like the health care system in Sweden makes a lot of sense. It also makes sense to regulate the amount of k-vit rich vegetables which I hope to learn to do as I get more experienced. I have the lupus factor, but never heard of the Lupus Anticoagulant. I have to research that. I don't see my rheumatologist until late June so I can learn more from her also. Thank you so much. Don't know what I'd do without this site and all the good advice.

    Reply

    Hi Loretta what is the k-but diet. I have lupus anticoagulant and have been on warfarin for almost 9 years now and no medic has ever advised me to follow a specific diet. What are the benefits of following such a diet?

    Reply

    Not a specific diet, but told to monitor and be consistent with veggies containing K vitamin each day

    Reply

    Hi I can see you have already been given some good advice both by your medical consultant and also people on here, regarding the regular diet to steady INR. However it is true that some people to change over to Fragmin or similar, and that has to be a decision between your doctor and yourself, but a good point to raise, although I am guessing they will probably want you to stay on it a while longer yet. MaryF

    Reply

    Thank you Mary. Is Fragmin a generic drug? I'm on generic Lipitor and brand name Plaquenil because of headaches with generic and it's so expensive but I feel better on it. Trying to basically stick to generic.

    What are the benefits of Fragmin?

    Reply

    Hi Loretta 1106

    If I were you avoid to eat lettuce. Everybody is different but it has a quite negative effect on me. Since I stop to eat it my INR is perfect.

    Good luck

    Reply

    I have not noticed anything special so we are indeed different. I even eat it every day. Kerstin

    Reply

    Great advice. I'm still so new at this. I thought we could eat limited amounts of iceberg lettuce which is supposed to have little K in it?

    Reply

    So I have learnt also. I do so. It is CONSISTENCY in what you put in your mouth that is important. Make notes and read about what sort of vegetables that make your INR to drop (K-vit rich vegetables) We are also different how we react and how fast.

    Kerstin

    Reply

    Yes, you are right. But you have to eat tge same amount every time. That's what my rheumatologist told me.

    Reply

    Loretta, fragmin and lovenox are both brands of heparin in the US. They are very expensive (my copay is 20% of the cost which is currently $115.00 dollars per month but was double that when I was taking twice the daily dose), but for some APS patients they are more effective than warfarin and there are no dietary restrictions and no lab monitoring required. For the APS patients who have a labile INR on warfarin, it is also likely safer than warfarin, because the level of blood thinning is stable not highly variable as it can be with warfarin. It is however given by daily or twice daily injection and there is no reversal agent for lovenox (but the half life is very short, about three hours). Like most things in medicine, there are pros and cons, risks and benefits that need to be considered.

    Reply

    Wow thank you--good information. That's really expensive but nice not to have to worry about diet and constant blood tests.

    Reply

    I agree. Real good information for us all!

    Kerstin

    Reply

    The self testing machines are no good if you are L.A. positive- the manufacturers won't even back there results. I was put on enoxaparin {lov-nox } as a bridging for my surgeries , the first surgery i stayed on the Enox. for 7 1/2 weeks or so because they needed to test my protein S & C and couldn't while on the warfarin , so that was the longest they would leave me on it , it isn't strong enough for me and my many problems. but with some people they do OK ???????? jet here in N.H.

    Reply

    Hi Jet. You are so right. The manufactureres wont back it up. I had it for a trial and I am fine on it even if I got Lupus Anticoagulant. The problem is the discrepeance (difference) between labtest results and your machine. We have followed it and i have been double-testing it for a very long time and the difference is Always about the same.

    I am glad to see you back. Hope you feel better.

    Kerstin

    Reply

    Hi my friend - another thing I have learned is testing in different hospitals can make a huge difference on PT/INR results up to a .06-which is 1/2 of my range and when I test the same day {with in hours } and I am coming back at a .09 than am I a .03 or am I a .15..Taking into consideration that I can go from a 2.4 on Monday to a 9.1 on Thursday this is scary. I wasn't going to say anything til I had more info -- but I have been having a lot of trouble with flares very frequent even when my blood WASN"T way out of wack. Some of you know I have been clotting , left leg super facial clots but they are deep by the deep veins but not in them as of last week . Sunday A.M. 3:30 stabbing pain in left side of my heart lasted 3 or 4 minutes { seemed like 1/2 hour }. this pain was so bad it was paralyzing Did I pass a clot or a heart attack ???? Dc's don't seem so alarmed !! I have notified PCP and Rhueny Nothing , left arm continues to go numb and sometimes aches. . Tuesday blood came back 5.2, which is high but there is no reason for it to be that high . I am glad it is so high because of what happened Sunday night or should I say Monday morning .. Legs still hurt , left where clot is and right are still sore and numb. so I don't know what to do next -- scary -- my little dog Casey jumped on my chest on Sunday and wouldn't get off// At least he isn't ignoring me ..SO my time may be limited.. who knows at this point

    Casey ans me

    Reply

    Hi jet,

    I only wish I could speak to you in Swedish. I do not use the translation because it is so bad here so I write directly from my own knowledge of the English language.

    So here we go: 1. Do you have a doctor that really understands what your problems are and knows APS?

    2. What is your therapeutic range and what is your target?

    3. Before the "machine" i did a test in a finger. That was questionable if it was ok-

    Now I test every second day at home. We have chequed that the difference between lab vein test is 0.8 - 1-0 and if my INR is higer the difference is more. Perhaps 1.1 - 1.2.It is not frightening as long as I do not end up in hospital! I am afraid of that.

    4. If I test at a lab (nowadays I need to do this only every 6 - 8 weeks but I can come earlier if I think something is wrong. I have a nurse and an Heumatologist (one of my steady doctors) that knows me and can help me-

    Nowadays I take a test at home and go to the hospital (within 2 hours i try to be there) Then they call me later on the afternoon and want to know my "home-INR) and I get the vein lab test- Always in my vein!

    I have about 8 - 10 different tablets but stay on them and never change. If I change for 1 day is usually do not effect my INR but it I change tablets more than 1 - 2 Days it will absolutely affect my INR.

    I am not working so I can buy healthy food (many sorts and colours) and only take it out from the freezer or refridgerator (I prefer lots of Salmon). Do not forget the nuts and broccoli. If I am low in my INR (take a test every second day at the present) I do not eat so much broccoli. Here we talk of rather small amounts of broccoli-

    If I eat out I cheque my Coaguechequemashine as usual and see if that food has Changed my INR.

    Jet, I can come back to you again. We must help eachother as much as we can. I know it is important to have good doctors. I must rest a while now. Take very good care and give my love to Casey!

    Kerstin

    Reply

    Hi Jet, How are you doing my friend? I am thinking of you. Can you take walks with Casey without pain now? Hope to hear from you and Casey.

    Hugs to you and Casey from Sweden. Kerstin (your buddy). Do not know what it means though. Could not find it in my Dictionary.

    Reply

    Wow, I'll know for sure after my 3rd series of tests since stroke if I'm definitely L.A. positive. I have to ask my rheumatologist more about LA. I know a lot now about APS and the Lupus Factor but not LA specifically and how it relates to APS--so much to learn . This is a learning process and I am definitely on my way. So glad for this site.

    Reply

    Yes you are so right. It is a Learning process! I have had to read 6 of prof Hughes (even small) books to "get" what it is. Buy those books!!! On the Foundation site I guess.

    I am so glad you like this Forum. Exactly like me

    Kerstin

    Reply

    Thank you. I do have I just eliminated avocado and it seems that my INR is more steady now.

    I do have Understanding Hughes Syndrome: Case Studies and that has helped me tremendously! I'll look for the others. I put in on my Kindle because it's easier for me to read as I can increase the print.

    Love the forum!

    Reply

    Hi Loretta, We can eat most things. What is important is that we have CONSTANCY and keep eating it. Of course you must know the vegetables that have much K-vit which will reduce our INR. Broccoly and brusselsprouts contain much in weight and are heavy. Other vegetables can be rich but have no weight. Then you can eat more of them. They often compare the vegetables in weight. Hope you get what I mean. Better you read a book about this.

    I do not think that Avocado can be dangerous. Eat all sorts of things.

    Good luck. Kerstin

    Reply

    I'm going to do that. Thanks.

    Reply

    I had problem on heparin for more than 40 years. I have good results on Xarelto without any testing needing (& I had no bleeding problems)

    Reply

    I think Zarelto is a very expensive drug here but it's something to consider with all the testing and diet restrictions on Warfarin -:)

    Reply

    Hi again Loretta,

    Xarelto is about $300-310.00 per month but if you have insurance it will be a big,big help. With my insurance I only pay $17.00 a month.

    (I'm a Loretta too/not too many of us)

    Reply

    You are very lucky. I do have insurance for Paquenil and I pay $120 out of $300 but have to get approval every 6 mos as to why I can't use the generic. Xarelto is a drug I don't know much about--??no testing and no diet restrictions??

    You're right - there are not many Loretta's around now. Have a good day.

    Reply

    Saw a ad on TV about help paying for Xarelto but I didn't write it down since I pay so little but I did a web search for help paying for it (can be as low as $10.00)

    xareltohcp.com/access-affor...

    Yes, no testing & no diet restrictions with Xarelto. I hope this helps you. I use to use lovenox, but I hated having to stick myself in the belly. Xarelto has been a God sent for me since I couldn't tolerate heparin.

    Good luck & have a blessed day

    Reply

    Thank you so much. I will research that option for payment.

    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