I'm still trying to get this right.... I take 12.5mg of warfarin daily. My doctor wants my INR range to be between 2-3. I eat approximately 20-30 mcg of vit k daily. Problem is when I test and it is 2.2 or less he wants to change my warfarin dose. I am due to have a bone density that is probably going to be screwed up due to my lack of vit k consumption. This is ridiculous. I am trying to convince him to raise my range but he wants documented proof that this is what should be done. I have found information on apsfa.com. Would like to know it there is a written "fact" sheet on this, that I can print to give him. He is who discovered I have this and up to this time haven't had anymore issues but I'm sure the lack of sufficient vitamin k is not good? Thanks in advance
What dose of warfarin do you take and... - Hughes Syndrome A...
What dose of warfarin do you take and what is your INR range, also include estimation of amount of vit k you eat. Appreciated💙
Are u from USA? Having APS u feel better when ur INR is raised! After almost a year I finally convinced my Hemo to keep me raised! I'm 3.67 and he finally said ok! A milestone for me! You need to sho ur doc some of these forums! He asked me if I felt better on higher level & I told him yes! U need a doc or an advocate to help you speak up and b heard! Good luck!
Ps I'm from NEW YORK, USA!
Us, nj
Do you know of a published fact sheet on this. How much warfarin do you take and how much vit k do you ingest?
Therapeutic range for me is 2 - 3. I do not take any vitamin k or anything else
If you have APS (Sticky Blood) an INR of 2.0 - 3.0 is too low for most of us. We get clots or embolies when the INR goes too low.
Ask your Specialist of APS to be at a higher INR as we have very thick blood and when it is thinned we feel ok.
I have an INR of 3.2 - 3.8 and feel best at the higher level.
Best wishes from Kerstin in Stockholm
me too. who's your dr?
Knew it! Do u have APS specialist! I have a Hemotologist! Can't say he's a specialist! I was under his care for over 10 years with a sludgy thick rare blood disorder! He never tested me in all those years for APS, till I lost my left leg with arterial clot in heart and settled in my foot! It was Christmastime!, The vacation week of docs between Christmas and New Years! So for both those reasons I lost my leg and had to be given clot buster in hosp on New Year's Day! Do yourself a big favor and find a RHEUMOTOLOGIST or Hemotologist that really specializes in APS! Good luck! Our USA docs have not caught up with UK as far as ANTICOAGULATIon! They're in the dark! We must educate them! I have with my Hemo and Nanny 23,my sister has it too! Good luck and we live close if u need anything! You'll find on this forum u will be educated greatly! Awesome people willing to help us!!! Godspeed!
I am sorry you did not like the book so much.
Lately we have discussed Warfarin etc so hope you have read some questions a couple of days ago.
I have read that you selftest at home twice a week (?) and have an INR of 2.0 - 3.0 We also spoke earlier about the difference in INR between a vein-test at a lab and the fingerprick-test at home with the machine. For me it is a difference of 0,7 - 1.1 in INR but it is the SAME DIFFERENCE between the two tests with a discrepence of 0,1 - 0,4 which is ok.
It is the vein-test INR that COUNTS. When I have a high INR the difference is bigger between the two.
Hope you can get a higher INR. So if you have an INR of 2.5 on your machine you may perhaps have a real INR of 1.9 in the vein. You have to found out as it is important. We are individuals though.
I just wanted to tell you this as perhaps your doctor does not know this. Try to get a Specialist though !!!! Or someone who is willing to raise your INR quite a bit!
Hope you can get some suggestion of a "FACT SHEET" to show your doctor.
Kerstin in Stockholm
I had my finger sticks done daily every other day by vein and finger stick simultaneously when I first got the machine. They were off by .1 to.2 each time so that was manageable. Both my Dr and I were comfortable with this. Problem I'm having is when it went up at 3.0 he wanted to decrease my Coumadin he felt its to high and is concerned about bruising and more importantly bleeding. I am not comfortable with this ! I was as high as 3.4 and had no bruising! It's becoming more and more difficult t o keep my vit k intake any lower.
You can be glad that the INR-difference in fingertest and veintest is only 0,1 - 0,2. That is good.
If you take a little more of the Warfarin tablets you should be able to eat green vegetables like broccoli and brusselsprouts (contains most K-vit as we need). As you selftest you could also monitor your own anticoagulation. I do that and just ask if I do not know what to do. Could you change your Doctor to a Specialist who understands?
Make notes of everything you do (very important). Drugs,exercise, viruses, amount of greens, ev a glass of wine (I never drink alkohol as that would be too difficult with my unstable INR as I have Lupus Anticoagulant). I drink 15 cl of wine every day for dinner and never more.
We are all individuals. How much Warfarin is very individual for each of us but the INR is the same and very important to keep steady.
If I go under an INR of 3.0 I have to take a Fragminshot. I feel best near 4.0
Kerstin in Stockholm
BrillI anticipate info Hidden
No Warfarin for me, I get by on two doses of Aspirin a day and a drug called LDN. MaryF
Hi Mary, I have an update and question for you. I have been taking Warfarin since the discovery of blood clots in my lungs about 2 weeks after a hip replacement last spring. I was tested and found to have LA. I did well enough on the Warfarin until recently when I developed a headache. After a few days I tested my blood and found my INR to be at 4.1 when I'm meant to stay in the 2 - 3 range. I corrected it quickly with Vit K, but the headache was not going away. Long story shortened; I had a CT scan of my head and I was bleeding. I was admitted to the hospital, had the blood thinner reversed, and given steroids to deal with the blood in my head. This just days ago... They want me off the warfarin for a month and then, presumably, they want to get me back on something. I will now add that when I took my second LA test, the one at 12 weeks to confirm the diagnosis, I showed no antibodies. In other words, it's gone dormant. Nevertheless, the docs do not want to take me off of a thinner as it can activate again for no apparent reason. My question; I want a new plan. I am interested in the Low Dose Naltrexone & baby aspirin approach as well as supplemental D3, fish oil and nattokinase. Is the LDN & baby aspirin all you use to combat potential blood clots?
I'll just add that my medical coverage in the US is through Kaiser and they like to send me to hematologists rather than rheumatologists because they seem to place little emphasis on APS/LA is autoimmune in nature. They know very little and just want to thin my blood. I insisted on another appt with a doc in rheumatology and will see him in a couple of days. I really want to make a case for getting off of the Warfarin which nearly did me in. I am otherwise healthy and want to keep it that way. I take no other prescription drugs.
What do you think? Have you an explanation for how LDN has helped you with APS? I really think I am relatively low risk. I can appreciate doing something, but I think Warfarin may be overkill in my case.
Thanks so much for your time. Best, Mikki
My advice to you is to take up the offer immediately for an alternative anticoagulant! Due to your history of clotting. Each case is different, I have a mix of disease, Hughes Syndrome/APS is only one of my diseases, (my last tests showed antibodies, again but not in the high tier), and of course results can come and go. However most importantly my clotting issues were severe in my first pregnancy, and I was on Fragmin for that one, and then the next two, however outside of pregnancy, at the moment, I am ok on Aspirin, However if I had another clot, I am sure I would be on some form of anticoagulant.
My situation could change at any time, but currently this is my regime. If I were in your shoes, I would be insisting on an alternative form of anticoagulation and very very close monitoring. It is all a very complicated balancing act which I am sure you and your main consultant will work out in the near future.
My diet, exercise and supplements do help me that is for sure, as does my natural thyroid medication, supplements, Aspirin and the LDN, My Mediterranean diet has not changed over the years other than to remove the obvious irritant of gluten.
I have heard of people doing very well on Nattokinase, but I have not used this. You would need to consult your current medical consultant and also another perhaps regarding this. You need to find an expert on this drug. I wish you well.
Bottom line, this is an unstable condition, results come and go, please do take up any offers of help. There is a choice regarding anticoagulants. Any alternatives will need weighed up by an expert.
MaryF
Excellent, thank you so much for that clear response. My instinct is to go in this direction and as you say, do it with some close monitoring. I see no reason, with only one (admittedly major) incident of clotting and no current LA antibodies, to risk my health to the extent of bleeding in my brain. I will make the case. It seems that in California, I can get a prescription for LDN through a naturopathic doctor and I have one outside of the Kaiser system. If my new rheumatologist at Kaiser will not try the LDN and aspirin, I'll work with someone else on it. I think I can craft a good program for myself and request steady monitoring from them. How often are you getting tested for APS antibodies?
My antibodies plus other tests are done once or twice a year, and to be clear, I have said I would be working with a consultant to try an alternative form of anticoagulation,
My LDN is not for anticoagulation but to bring some sort of good behaviour to my immune system, (I have many conditions including also Lupus, plus episodes of Stevens Johnson disease), which makes me a tricky patient in terms of infection and drugs that can be used on me. For instance a life threatening reaction to Plaquenil etc, also dire reaction to nearly all antibiotics.
I will also add that if you are on any Thyroid medication, LDN can make your thyroid work more efficiently so often the dose (thyroid meds), needs to be closely monitored and often reduced. I have not had a major clotting incident since pregnant with my first child, that is the difference between yourself and myself! You have had recent PE's in your lungs! Best wishes.
MaryF
Good point on the recent activity in me. I will keep it in mind as I wade through this. I also figure the LDN as helpful generally rather than specifically. I still suspect that baby aspirin may (may) be enough, but monitoring me will be the key.
My brother had Stevens Johnson syndrome, terrible and difficult when what triggers it is unknown or practically anything... Hard to just take drugs willy nilly with that hanging over your head.
I don't take thyroid though I think I'm on the low side. LDN would be helpful in that case, I'd assume...
You need to properly look at your thyroid beyond just the TSH, here are just some of the tests I do: thyroiduk.org.uk/tuk/testin... I am on natural desiccated thyroid! MaryF
I will also add this, I understand a few people are doing this supplement instead of Warfarin, however here is a documented case of one person's use of it: ncbi.nlm.nih.gov/pmc/articl...
MaryF
Looks like they don't recommend the Nattokwinase, but there may be some benefit determined down the line. Looks like it was a failure for this person.
Weigh up your options carefully and go back to your consultant and ask about alternative anticoagulants and closer monitoring you don't want to find yourself with another clot. I am sure others will answer you on here, including a couple of people who are using the alternatives that interests you.
MaryF
I will do that. I really don't want another clot! Many, many thanks for the chat.
Depending on your age, gender, medical history (cardiac, previous stroke-TIA), etc., etc. your risk of a minor or major bleed is something your physician is considering in how aggressive to be with warfarin intensity. The vitamin K consumption is tricky but 20-30 mcg seems quite low if you are concerned about preventing demineralization/osteoporosis. You may want to discuss with physician slowly titrating Vit K up to a more normalzed level through careful diet control (of both vit k intake + vit k antagonsists) with daily monitoring INR with venous draw (not home test) to reset warfarin level-and then keep it there or as close as possible with consistent diet, exercise, stress, sleep levels.....many physicans are "comfortable" keeping the INR is "low 2's" as its within the therapeutic target range-BUT they don't live in our bodies that feel the effect of of a lower INR.....I feel it for sure....
I'm not on warfarin now but when I was I took vitamin K2 supplements as long term use of warfarin can lead to calcification of your arteries. My APS is in remission now so not on any medications
Hi Good4u,
I know I answered on your question here 2 years ago.
You were at that time on Warfarin since 2,5 years with good result so now I wonder why you stopped taking it and you say you are on a "remission".
We also talked about micro-clots that are not seen on a Scan (mine never were) but by antibodies and symptoms and severe damage to body (for me Pulmonary Hypertension and heartfailure and leaking heartvalves).
Best wishes from Kerstin in Stockholm
My understanding is that a lower vitamin K number is the expected result from taking warfarin, because that's how warfarin works – it inhibits the uptake of vitamin K and therefore provides less raw materials for activated platelets.
Sad but true. There are other medications that work in different ways and so need not subvert the Vitamin k metabolism pathways. But the positive aspect of warfarin use is that the medical community has used it for decades and so far there are no surprise side effects, other then the expected consequences of Vitamin K deprivations.
I've been on warfarin for 16 years. I did have osteopenia, but after accidentally discovering I have gluten intolerance and going gluten-free the osteopenia resolved and my bones are now good and strong. ( I hike and head to the gym for weight work twice a week, and my docs credit that for the stronger than usual bone density results.) I do have a higher than normal normal serum calcium levels, and yes, I have osteoarthritis ( another reason for the gym visits.)
But we get the body we inherit and not the ones we would ask for. Before treatment I had mini strokes and DVTs. Id rather deal with the long term issues associated with warfarin's effect on K then deal with the issues assiciated with brain damage from ischemic strokes.
As Dr Hughes has stated in a patient lecture I viewed online, we currently can only treat the symptoms of APS and not the immune system mistake which is the cause of our disease. We all cheer those medical researchers on with a " Forward Ho!" as they strive to fund the first cause and can then pivot treatment from mere management to a definite cure!
In the meantime...
I know this but thank you for responding. That's why I keep my vit k intake very low
My INR range is 2.5-3.5. This is because I also have a mechanical heart valve. I notice no difference in how I feel when I INR changes. When I first started on Coumadin, I was crazy about checking Vit K levels in food. After I met with a nutritionist at my hematologist's office, she helped me chill out about it. I usually have some form of green veg like a salad, broccoli or spinach every day. I also drink a cup of green tea daily. Be consistent in what you injest. Grapefruit can affect how you metabolize meds too. I saw a different hematologist when I first started, every time I was the teensiest bit out of range, they changed my dose and I yo-yoed up & down with my INR. I switched to a different hematologist at a different hospital. They managed their patients' INRs differently. If I'm slightly elevated, he'll tell me to go eat a large spinach salad. I've been in the targeted range the majority of the time with this approach. My doc is the head of hematology at Georgetown University Hospital.
Lisa in DC
Hello again, I still have APS , test positive for the 3 indicators. Took me 14+ yrs to get diagnosed. Multiple times misdiagnosed, 3 times by neurologists over this time to name one of the specialist. I know others have had bad experiences as well, comes with having a rare disorder. APS is an autoimmune disease of which there is many. The antibodies you have will determine what "name/s" your autoimmune disease will be. In our case our blood runs thick & prone to clotting. Even though everyone on this forum has APS, we will all be affected differently due to our genetic makeup.
I've been on various medications as I also had vasculitis antibodies. Cyclosphomide infusions (chemo drug) for vasculitis, mycrophenolate (immunosuppressant), plaqnil, high dose prednisone, warfarin. In late 2011/2012 various pain meds as I was in full blown autoimmune attack. It's a long story.
Four years later I am on no meds & pretty healthy working full time.
I give you this analogy to explain.
Think of a tomato seed. In simple terms if you want to grow the plant you need to " plant it" and in this case we will put in a pot. Now for that seed to grow into a healthy plant producing lots of tomatoes, you need to nurture it. Good soil, fertilise, water & sunshine. Attach it to a stake so it doesn't fall over. If you plant the seed & then place the pot in the cupboard, nothing well happen. Seed lies dormant.
Now me - APS is my seed. I am genetically suspectable to autoimmune disease due to my family history. This will never change.
I don't allow my APS seed to germinate. So that means, gluten & dairy free. Try to keep sugar down. STRESS is a massive trigger so I try to watch that. Deodorants are natural. I don't wear makeup or put on any creams. All these things are full of toxic chemicals which are directly absorbed into the body via your skin. I use coconut oil on my face. I take natural blood thinners like drinking cinnamon tea which is potent blood thinner. There is so much that can be done.
Recommend reading a book called the Wahls protocol. Written by doctor who has MS. She did all the drugs but now medication free, controls with diet.
Good luck with whatever you do!
Carmen Australia
Oh, sorry me again! Forgot to mention a big help for me is vit D supplement 1000mcg everyday and K2 180mcg. Vit K is found in green leafy veges & will impact INR levels. My understanding is Vit K2 shouldn't. K2 makes sure calcium is deposited in your bones & not your arteries. When I was on warfarin 10mg I still took K2.
Hi
My INR target is 3-4 and although I'm a bit unstable I generally take 5.5mg a day.
When my INR is below 3 I start to get neuro symptoms again. Numbness in my tongue and the return of palmar livedo reticularis.
Over 3.5 and I get no APS symptoms at all. My dr and I try's to keeps me at the higher end of my target as I feel so well then.
I found a "fact sheet" that can be printed out for my Dr! RIGHT UNDER OUR NOSE.... It is in the Hughe's Foundation fact sheets under self help: "INR and self testing"
To everyone: Thanks for all of you replies keep them coming. I am in the process of finding/ getting an appt with an APS specialist in/near Seaside, NJ in the US😉
Wow I'm very happy for you! I teen toy found 2 new docs by accident! It's difficult here in USA! We r neighbors, keep in touch & let me know how ur specialist is! I go to new Rheumy on Wednesday! Godspeed
Who did you find and where best of wishes in hopes for some great care!
Hi, I have very unstable INRs, the readings are up and down all the time. My range is 2.5 to 3.5 but I am much happier when it is 3.5 or above. I take 2.5 mg Jantoven or 5 mg Jantoven depending on the day of the week. It is always floating back and forth between 5 mg on 3 days, or 5 mg on 2 days. And the 18th of August will be my 10th anniversary of this - my INRs have always been very unstable.
So a couple of years ago the hematologist recommended I start 100 mcg of Vit K per day, in addition to getting about 120 mcg of Vit K per day from my food. The hope was that it would stabilize my readings (it hasn't helped). I also take 4,000 units of natural Vit D daily. Also on prescribed Vit E (400 iu) and an aspirin a day.
I wrote in to the list about this issue a little while ago, and while haven't gotten any new lead it is very interesting to read the responses and see how we're all So different and what works for one may not work for another. It is certainly a process and I hope to find my Magic Key to stable INRs someday!
Good luck to you! It can be so hard with the docs, often they don't understand the disease very well.
PS I am also a NJ girl!
Really from where in NJ, I'm near Seaside. Do you have an APS specialist? I am having a hard time getting through to the doctors in Princeton who work out of hSS in NY, USA. Excited to hear back from you.
Forward ho,onward and upward!
Range for me is 3.5 - 4. Anything below that and I feel tired and achy. Higher doesn't seem to bother me at all, but it definitely freaks out doctors. 
my INR range is 3.5 -4 which takes somekeeping into due to ‘life ‘😁 My warfarin dosage is alternate days of 6 and 7 and Saturdays and Sundays are both 7 , my blood gets taken every 2 weeks if I’m having a good couple of positive tests they let me go 3 or 4 weeks
Doesn’t take much to alter things even last week my INR was 4.3 couldn’t think why except I’ve been in a lot of pain with an on going knee problem which I was told pain affect it
I wonder if you have a Specialist who works with you and your Warfarin?
Are you always in range when you test at the lab every 2 week and sometimes you have to wait 3 or 4 weeks before you take a new blood INR-test?
You have the same therapeutic INR-range as I have here in Sweden but I test myself at home several times a week as my INR changes a lot. Therefor I do not have to go to the lab to do the veintest more than every third month if I do not want to do it earlier myself.
You can be very lucky if you have a very stable INR with your Warfarin and APS. Probably you are not positive to Lupus Anticoagulant (LA is not Lupus/SLE but an antibody) either.
I do have a specialist, although I don’t speak to them all the time
I go to a clinic in my surgery where a nurse from the hospital comes for blood taken, then the hospital Warfarin department ring me with the results, if it’s high /low they will adjust my dose then tell me when they want to see me
In the 6-7 years of being on warfarin it’s not been mentioned about home testing and no one has mentioned Lupus to me
Acenocoumarol - anyone tried this instead of warfarin?
Which self testing machine?
