Good morning! It has been a while. I was informed yesterday that my antibodies had become worse and he wanted to switch me from Eliquis to Warfarin. I always wondered why had had me on Eliquis(for 2 years) to begin with. But he is on the APS list of docs for the USA so I trusted his knowledge. What I am really writing about is I am scared about the Warfarin. I will start it today. I am 41. My grandmother died after open heart surgery because she was not put bridged properly and her brain hemorrhaged. Will I have to take this forever? Is it really rat poison like people say? Do I really have to give up drinking wine?🙈😆
I would love tips and suggestions as a newcomer to the world of Warfarin.
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Ylmom
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1. I am positive for Anticardiolipin, Beta 2 glycoprotein for the last three years with the Eliquis. This time he said he had been doing more research and tested me with the above and added an APS panel. The Phosphatidylserine IgM came back >100 and he said it was time to go to Warfarin.
2. She was not Dx with APS. This was 15 years ago. She had several strokes and heart disease. Had the open heart surgery which went great. Few days later hemorrhaged.
3. I have never been positive for LA
4. Yes, my legs are always numb and if I sit for more the a few minutes they completely fall asleep.
5. My hematologist prescribes the Eliquis 5mg 2x daily
6. No
7. No
8. No
9. Do not see a Rheumy anymore. Even though I had a stroke and tested for two antibodies, because I had no miscarriages, he refused to treat me. Thought I was seeing the best one in the state and actually had to turn him in because he was so clueless and made fun of his interns ethnic background in front of him and me. It was awful. So unprofessional.
Ok- I’m back with you now! Thank you for you patience on my delayed response.
I appreciate your answers to my questions.
I forgot to ask you which state you were in.
Unfortunately you have had a very poor treatment regimen. You really need to come off the Apixiban straight away. A stroke is a serious arterial event. A hematologist who knows APS would know that warfarin is the drug that is the gold standard for arterial involvement in APS. There are a few instances where this is the exception to the rule, but that can be left for another discussion if needed.
I see no reason why you shouldn’t do fine on warfarin. The fact that you are not positive to the Lupus Anticoagulant antibody should be a plus in predicting a slightly more steady INR for you- but no guarantee...
Usually with a stroke history, both a statin and some kind of very minimal anti platelet is considered. Even if it’s just a partial clopidogrel every 5th day. You would need to really discuss this with a top Hematologist.
I’m very glad your Hematologist has recommendation switching you- ask him if it’s because he read about the RAPS trial being stopped early. (If he would have known about it in the first place he would have never had you on a DOAC to begin with...)
You need to have your cholesterol checked.
Have you had your homocysteine checked? You might need methylated folic acid.
Have you been symptomatic on the Apixiban?
Don’t sweat the warfarin. Just stay very steady with diet. Keep a log every day of dose, other meds taken. You will need very frequent vein draws. Ask for a standing order. Lots of medications interfere, and some foods. Mostly the foods will make sense- green leafy veggies containing vitamin k. Just keep them steady...
A few odd balls to avoid: licorice, grapefruit, cranberries, green tea!
You will get the hang of it.
You will learn to , “ Eat on Warfarin.”
Hey... actually... that’s a book I’m recommending you buy! By Cath Atkins. ( out of Scotland. She has APS- and had a stroke. )
Google her! She has a blog.
Again- sorry it took a while. Where are you? Which state?
Erm, the RAPS trial wasn't stopped early, it was successful - just doesn't apply to arterial clotters because they didn't include any. There is no clear reason why the lab tests they used as a surrogate outcome should behave any different in arterial clotters, but they weren't in so the result doesn't apply. RAPS, of course, doesn't apply to Eliquis either...
The RAPS trial _did_ show higher quality-of-life for Rivaroxaban over Warfarin - doesn't surprise me, I was on anti-platelets for months and experienced significant (to me) reduction when switched to warfarin.
The balance isn't a simple one - Warfarin has other risks from drug interactions (other conditions may become untreatable), theres the arterial calcification and most notably a significantly increased risk of brain hemorrhage compared to NOACs...
I purposely did not attach a link, as i believe it will not apply to Ylmom, and will further confuse her. My actual point in mentioning the trial, being a fellow USA southerner, is that it can be challenging to find APS specialists, let alone hematologists who are familiar with the trial itself. They should have been aware of its publication in 2016x many here were not.
They are only made aware after ,”noise” is sounded- after the fact and a liability is flagged. That’s how it works here if you are not at the top of your game. CEU’s and alerts- when it’s too late.
Most hematologists here primarily focus on oncology. In fact, our physicians call this type of specialists, “ heme/ onc.” This is for hematology/ oncology.”
A common question for me to be asked by doctors is , “ Who is your heme/ onc?”
In large oncology centers, there will be one , “ heme/ onc “ that is very much more specialized in the heme side of things, and he’s sent the pure heme cases .
The clotting disorders they deal with would be in the minority of cases they see come through their practice, and usually would be related to blood cancers, or more common clotting disorders like Leiden V, protein c or s deficiencies, or conversely, bleeding disorders. Von WB or sickle cell anemias , or other clotting cascade genetic deficiencies.
This is by far only my experience and not nearly as educated as some on this site, but...
I am a 51, my stroke occured when I was 50, confirmed APS positive. I had many of the same fears. I currently take 5mg 5x weekly & 7.5mg twice weekly. For me unless something new through research shows a better path, I am taking it for life.
I drink red wine! Pre-warfarin/APS I enjoyed a nightly glass.. I now choose to enjoy maybe twice weekly.
I have recently have had two invasive procedures completed (colonoscopy & loop recorder removal), was bridged properly. For me it did take about one month to have my levels correct again.
All in all I would say a good support system, positive thinking, self awareness, and attentive doctors make all the difference. Of course this group plays a big part as well!
I feel blessed every fabulous day and every brain foggy, off balance day!!
So glad you are doing well! Positive attitude plays a huge role! I must say I am down today but trying to keep chin up. My family needs me. My mom is great with support. Sometimes a little over bearing ha! My husband is scared. He lost his fiancée in a car accident right before we meet so he is in denial mode sometimes from fear of loosing me. The kids are no support at all lol. Which I don’t expect them to be..there kids. I am going to be more involved in this group for sure. I love love wine! Red or white! This will be sooo hard. I have a glass...sometimes two every night. That I know has to come to a halt. When I go out with my girlfriends for dinner, is two glasses too much?
Do you have any side effects from the Warfarin? I remember my grandmother being cold all the time.
Thanks Holly! How did you know you couldn’t take Warfarin? Is there a reaction I need to be looking out for? I keep hearing consistency which is good to know(especially the wine😆) It is also something I am not great at. These 4 boys keep me running like a crazy person. I am usually more worried about being consistent with them and myself takes the back seat. I am going to have to work on that. I am thankful my dr is taking extra measure and hopeful it will improve my pain, numbness and legs from falling asleep.
I'm not going to answer what my symptoms were as they seem to have only related to me (don't know anyone else with similar outcome - I'm just unique lol) and really don't want you to watch out for anything. You will know if you feel worse rather than better.
This is great information! I am you neighbor in Arkansas! I am a little overwhelmed at how much warfarin could help but how complicated it can be also. I know with time, and y’all a support, I can get it down.
My hematologist said this time “I have been doing some research and this is what we need to put you on”. I always worried the Eliquis wasn’t the proper treatment but the road to DX was not easy as with many. Two things:
1. Do you self test?
2. How do I know when my INR is up or down if I don’t test at home?
1. I did self test. Every day to every other day. Now Alere ( Roche) just made it impossible to get strips really. I’m working on this... hang on. I’ve not worked any thing out. There was wa recall on faulty strips and it’s all gone tits up.
2 I have to get a vein draw every other day. Maybe every third. I don’t want to scare you off just yet! So don’t worry...
I am not normal... but I keep clotting through high intensity warfarin. ( INR must be 4.5 - even 5.0. This is NOT normal.)
We switched to Apixiban in November knowing it was not the first choice. 10 mg am and 10 mg pm plus statin and clopidogrel. I even went to 12.5 and 15 mg twice a day within a few days because my APS symptoms returned- within 10 days I failed Apixiban and was taken off- no bleeds at all- but I did develop DVT.
I need a very high INR.
I was drawn this Monday. I was 5.45 ( a little high.)
Today I was 3.74. This is too low.
I’m way too low.
I weigh 112, and take 18.5mg warfarin on average most evenings. Tonight I took 20mg and had no greens. I’ll have some sautéed spinach for breakfast with eggs tomorrow morning.
Oh, and howdy neighbor! Another southern bell! A razor back!
As to the red wine; I can tell you that a wellknown Reumatologist told me in 2002 (I was at that time not yet on Warfarin only Aspirin) that i could well dring one glass of red wine for dinner. He went for Canada some years later but he know APS well at that time.
I have done that since 2002 - but only ONE glass. First of all it will interact with the Warfarin if you change the dose of wine and also it would not be healthy to drink more than one glass if you do that every day.
I would tell you... have a small glass every evening. But very small. If you enjoy it- you should have it! But your INR will be more stable if you do it every evening.
Being contrary again - early afternoon or morning. But that's me. You need to find what time works best for _you_. The clinics want you to take it evening so they can call you and adjust that day's dose - but it's only twelve hours different and dose changes take up to a week to work, not worth bothering about.
I started off taking it with my evening meds as instructed, had horrible stomach / bowel trouble and not a lot of sleep, which kicked off a cascade of prescribing more and more drugs for the side effects and then drugs for side effects of those drugs and so on. Then I changed the time I took it to earlier in the day (carefully, you can only shift it a bit each day, an hour max I was told), and almost all of those other problems went away.
Note that I didn't change the warfarin time on a whim - I found multiple instances of advice online that it might help, and it did. So, it's what works for me, but not just me.
Oh, so do mine - but taking it evening (or more particularly, taking it _after_ evening meal, which isn't that late in our house due to kids), does bad things to my GI tract, and apparently I'm not alone in that. When you dig into it the _sole_ reason they say evening is so they can alter the dose that day, so 12hrs earlier than if you take it morning. That is just lazy ass management - after all if I'm low I can take an extra 0.5mg or whatever that evening anyway (or just get drunk), if I'm high I'll cook some spinach and be back in range a lot faster than with a dose reduction, if I'm really really high then probably need a vit k jab anyway.
When test strips are good, I self-test anyway and correct (spinach/alcohol etc.) anything that is out of range myself. I test more often than they want the numbers so usually I can test-correct-test and call in the "good" numbers. When I fail at that, or fail to predict the clinic, I invariably get given a dose reduction sized to send me plummeting through the bottom of the range. I try not to let that happen - which means I try not to give them an excuse to change my dose, ever, which means it matters not what time of day I take it.
Officially I take it evening, unofficially they don't care when I take it and are happy with the way I (unofficially) manage it and that I'm not bothering them about having crippling abdominal pain all night and no sleep.
I would ask your physician, and see what works best for you. Then read some of Ray46 ‘s suggestions he has tried/ read about on line if evening doesn’t agree with your body or time table.
Hi Ylmom try not be scared.I was angry I had to start taking it for life but here I am still pottering along. I take at nearest to 6pm I can along with all my other meds.
Yikes! Bless your heart! My hematologist didn’t really tell me how often to go to my PCP to get checked. He said about every week. Does that sound normal? So are the home tests prescribed or can I buy on? Still learning. And you can tell when you INR is off?
Is this reply to me? The answer is I cannot always tell, but usually I can if it’s too low. If it’s too high I may not be able to tell.
I would be getting a draw every third day right now to establish your personal baseline.
The folks in England will not be able to advise you on strip or the machines from Roche, as the strips are not as tightly controlled.
There are pros and cons to the strips/ machine. The only one to use at the time is Roche as far as I’m concerned. Some of us, including myself, have done personal trials with others without as much success as coagucheck from Roche.
Be forewarned and aware of their limitations. They are only to be used as a “approximate indicator “ of your INR range.
I only use it to help me know if I’m ,” trending” up or down. I know it can be wrong at times, so I don’t count on 100% accuracy. I also use it to let me know if something is suddenly very ,” off” and I need to go for an immediate vein draw. Those are its only two useful purposes as far as I’m concerned.
I tend to self test every day or every other day. It help me adjust my greens.
The coagucheck will almost always in most aps patients show a higher INR value than a vein value. ( the vein value is the true, gold standard value, and therefore the only true accurate measure of your INR.)
You must figure out over few months what your mean average of “ off set “ is. ( thus the scrupulous notes.) .
The higher your doctor sets your INR, the greater the disparity between the Finger prick value, and the vein value will be. The vein value will be lower.
Right now the strips are only available through Roche, and they have contracted out a monitoring service that used to be called Alere, ( they just changed their name about three weeks ago ... imagine that... rebranding themselves much after this faulty strip debacle?) and they require complete control over strips.
They only allow one strip per every two weeks. You call in your INR to them- they call and tell you how to adjust your dose. All for about $50.00 per call. Insurance is policy dependent.
The issue is it’s not often enough!
I called and spoke at length to try to get enrolled- but with more strips. Not possible. Only if you have had a surgery- special circumstances only- and then only for two weeks. End of story.
My doctor said that would not work- so he wanted me to get another supplier. I did. Roach has shut most down here. ( via the FDA: Food and Drug Administation - they have a medical device division.) somewhat to their credit- I understand. The faulty strips may be in the shipments if the strips did not come directly from a Roche facility pre faulty strip debacle.
My supplier could not guarantee they would not be.
So now I’m stuck with no strips and going to the hospital for a vein draw every other to every third day.
I'm not in US but I know that a large well known auction site (probably against the rules to advertise) has listings for test strips, including plenty in the US (you may have to check batch/code numbers with the seller to make sure they aren't bad ones).
I have bought this way, and so far never had a problem, including recently sourcing some old pre-bad-batches ones (283s) - clinic response was "those are gold dust", I was half expecting to be told off for buying on ****!
I wouldn't recommend that to a new user, and I still mostly buy direct from Roche, but if you are confident with machine & strips and (important) have some "official" ones to double-test against to check they are not out of whack, it's got to be worth a shot.
May still be a problem if you are required to call all results in through a "service" that tallys them with strips sent, but then I don't call all my results in anyway, only every two weeks (and they do know it - not sure they're completely happy, but it's my machine my strips my money and my fingers).
I called my supplier. He told me he can’t guarantee the lot numbers. He can’t open the brown cardboard boxes 📦 that look like the emoji I just included. The original Roche boxes are enclosed within that brown cardboard box.
I’m not sure why he just can’t do it... he told he he would have trouble reselling them.
The FDA is now closing down many of these suppliers.
Also, because I bought my machine from this man, and not Roche directly, Roche would not supply me the strips. Even if I joined Alere through them.
My doctor, who was in private practice, wanted me to have a home checked. He has a lab in his office- and checks INR and has a coagucheck also. He gave me a prescription for one.
My pharmacist ( chemist) couldn’t find a supplier, so we went on line and found the company I have been ordering through.
When the recall happened, I went to my doctor to see if I could buy the strips from him- he sent me to his lab- two doors down. The lab lady told me she had to find a new supplier! She had ordering from a medical company independent ( speperate from) Roache also!
It’s a nightmare.
Roach is claiming they are the only legitimate FDA approved supplier in the USA. Everything else could be forged, counterfeit, and therefore unsafe. So the FDA has a massive shut down underway.
But only since the recall... oh how interesting...
Now Alere is sending letters to Coumadin clinics here and to doctors sending patients to them who use test strips ( which why they wouldn’t do a vein draw on an APS walking into a Coumadin clinic is beyond me but in this case I think veins were fragile perhaps) to not use strips on APS patients at all- to send back to doctor!
I remember you commented on this gentleman ‘s post last week. ( Danny Boy.)
*******
May I private message you and ask for the supplier ‘s name?
Wow I think I learned more from y’all then I would have ever asking the nurse or dr. All great information. I was looking to by a home testing but had no idea how complicated it is here in the US. That’s crazy! I thought I would be easy like diabetic patients testing sugar. I really would like to be able to test myself, and still going as required, so I can see what my levels are doing as I eat certain things and have wine. I will be completely honest, the wine is what scares me the most. It will be very hard for me. I usually have 3 glasses a night and still have my 3 best friends that every few months we get together and I would have probably 6 glasses. Ok now that I have confessed my over drinking 🙈, i take a Vitamin E supplement for skin and hair. Did I read not to take E?
Your honesty is very admirable- and this disease will strip you naked and bare!
Well, good news! You are about to change your drinking habits!!!! If you ever thought... hmmm. Might this be a little bit of an unhealthy pattern? Do I over do it a little too much.... don’t worry! Never ponder that question again. Just put it behind you this very second. It’s done! Just like that! Your APS just became your tap on shoulder.
Seriously. Your liver processes warfarin. It’s going to be very busy helping you be the best you can be- and it’s going to be on a razors edge. And that’s the truth of it. I’ll just lay it plainly out for you. A small glass of wine to enjoy with dinner every night is fine.
That’s it. That’s all wine should ever be. Let me put it another way... from now on it is all it can EVER be.
This is not a lecture of any kind. This is simply how warfarin works. Luxurious little indulgences will no longer be with with wine.
You very well could hemorrhage from the brain or bowels or both.
This will be a change- but it really is ok. Tie in with me- let me know how you are. You can do it! You’ll have lots of questions. ( Ray46 is just joking by the way... he does NOT get drunk to adjust his INR ! Maybe a small nip of scotch.) He is brilliant... and I personally have a suspicion he is a secret brain surgeon... he procures very good articles for us!
Did you not tell your Hematologist you were taking vitamin E?
Please call your hematologist’s office and ask tell the nurse. Ask how they wouldlike for you to handle this. They will tell you exactly how to handle it.
I would advise from now on you refrain fro almost all supplements except the ones mentioned under our pinned post area. I would ask for these to be checked by your Hematologist. We ( aps patients) tend to be low in these.
I have been on warfarin for 10 years now after suffering a PE and stroke. I was very scared when I was told I would have to be on it for life. I did all the work researching just as you are now trying to figure my way around my “new” life.
What I’m going to say next will not be popular based on what I’m reading. I do not drink at all. Nothing. Zero alcohol. Being here for my husband and kids is my number 1 priority. I do not drink coffee. I try and eat as clean as I can to keep myself healthy (home cooking, no processed foods, organic). I do have a sweet tooth so on occasion I will bake from scratch “healthy junk”(i.e. organic ingredients, no preservatives or artificial sweeteners) “ lol.
I have always kept a log which details when I take my Coumadin, the INR readings, and any other notes I need to remember like how I was feeling, any diet changes etc.
I have always tried to maintain my vitamin K intake consistent. So that means keeping my vitamin K logs handy. I stay away from all the highest vitamin k greens.
I go into the lab weekly for a vein draw as it is the MOST accurate way of checking my INR. Sometimes if I’ve been stable I’ll go every other week. It sucks but it’s my new normal.
When were you diagnosed with Antiphospholipidsyndrome as you have been on Warfarin for 10 years?
Why should it not be popular here what you have just written.....? We have to find our own way to cope with APS as we are all unique even if we have the same illness.
Alcohol do not go well with any illness. A glass of red wine maybe as it can thin the blood a bit and some Doctors say it can be good for our heart if we keep it at a small glass only.
We know here that exercise and a healty living in general (including healthy eating) is important to keep us feeling better. Extra important for us with APS.
I am the same with food! Organic, non processed. I love Lisa Leake and her Cookbooks if you have never heard of her give it a look. Great easy recipes. I LOVE green food. And it is so good for you😫. How much do you have a day? It is complicated trying to figure out how to eat a balanced diet with little greens. Is there any reason you do not drink coffee? I love coffee in the morning so wondering if this is another cut I have to make.
Thanks for the suggestion. I will look into her cookbooks. Honestly with the greens I wish I could eat more. I’m eating about 50-60 mcg a day which isn’t that much.
I actually just increased it this month. I was eating much less but was recently hospitalized and off Coumadin for a few days. I took the opportunity to up my vitamin K as we were getting me back into therapeutic range and I was going for vein draws every few days. I wish I would have increased it years ago.
The key is to be consistent. I was so afraid of vitamin K all these years. Stick to the foods you see yourself eating consistently and go from there. The rest is all math. You need to check the vitamin k content in what you’re eating and always be aware especially when you eat out.
As far as alcohol and coffee goes I eliminated both one year before I was thinking about getting pregnant. I never went back to either because of all my personal concerns. While most may say that their doctors claim red wine is good for their hearts there is plenty evidence proving the correlation between consumption and increase of chance of breast cancer. Coffee is a stimulant and has issues of it’s own. See the link below.
Because of all I’ve been through I just choose not to take any further risks. It’s just not worth it (for me).
I’m trying to eat less chocolate though lol. Like I said earlier I do have a sweet tooth and will bake goodies from scratch. So I’m not 100% clean lol. Chocolate and sugar as you know are not good for inflammation and we need to be careful especially because of our autoimmune illness.
Ylmom - sorry I’m new to this forum as well and trying to get used to posting. Let me see if this will work. I want to send you a link of the list of vitamin K foods. I have been using this for 10 years. I also have an app on my phone but it doesn’t come close to this....
Yes I see where you were afraid of the vitamin K years back. Thanks to the group I see I can eat a small amount consistently and see how that works. I am learning so much! Sticking with what you would eat everyday is great advice! I love a small spring mix salad and could for sure eat one everyday. Going to check out that coffee link👍
( although a little joke aside, trying to help you, as I don’t want you to feel you have to give up EVERYTHING you enjoy in life...)
You did mention your gastric upset lately.
Let’s revisit that very quickly.
The acid in coffee can be caustic. But it’s not new to your system. The warfarin is. For most patients warfarin has very few side effects- but since you were experiencing what I type to mean dyspepsia of some sort, it could be that the acid from coffee in combination with the the warfarin is not agreeing with you.
If you’ve always had coffee, and maintain coffee, with no change to diet- coffee from a vitamin k standpoint will not affect your INR level or stability. I’ve never been told nor read of caffe affecting the INR.
However, it might affect your dyspepsia right now until you figure out why you are having issues.
If you feel comfortable, would y’all tell me you age at Dx and how long you have been on warfarin? You don’t have to say you age now lol. I am really concerned about the long term effects and wonder if your body becomes immune to it.
Yes Kelly in Texas I too had it from infancy! Always in the hospital starting at 3 weeks old!!! Always sent home without any diagnosis ever! I remember being carried by my father in neighbors car, cuz I only wanted my Daddy and screaming with hi fever and no diagnosis for the hi fevers! Just seizures!!! My first blood clot was in lung one month after my Dad passed! I was 24?& remember my mothers footsteps as they were trying desperately to get me to breath! I thought my poor Mother she just lost my Dad and now me!!! Well I made it! Had several Venus thrombosis in my legs! AKA/ PHLEBITIS!!! My Mom had several also! I'm sure she had APS? I was diagnosed after I lost my leg and had been under Hemotologist care for over ten years for anoyRare blood disorder called Polycythemia Vera! Was phlebotomized for more than 13 years! Then lost my leg to having arterial clot in my heart that traveled down to my foot! It was Christmas week! Went to two docs and was told by both I had a blockage! They said I needed an MRA? Never heard of it! Couldn't get an appointment and called doc New Years Day and he never called back and later found out he was on vacation soaking up the sun as I went to my Infamous Heart Hospital wher I'd worked for 6 years! My Cardiologist whom is Head of hospital called in my Thorasic surgeon(vein doc) and he yelled at me for not coming to him in first place cuz we knew each other well, I worked with him and mostly his wife I assisted! So he screamed at me on ER! They made me sign the paperwork for clot busters which may kill me, but if I didn't take death was certain so I signed! I was in so much pain at that point I'd have signed anything! So midnight they operated on me to no Avail and 3 more times till my sister Nanny 23 spoke to him and she had to tell me I may loose my leg! I thought my toes, but never my leg! I had no choice He did everything to save leg, but it was turning black and had no choice! I was on Warfarin and I too, in order to feel good needed a 4.5 INR! They could NEVER stabelize me, therefore was put on Lovenox/Enexoparin shots daily for rest of my life! I was very happy with this cuz no more blood tests no more costly co-pays or blood tests! I c him once a year now! I'm in extreme flare up now with My Sjogrens now! I'm going to a Rheumatologist on April 1st who specializes in Sjogrens! In the meantime I had from an oral surgeon Lidocaine liquid I had leftover 2 bottles that were still good! I can't swallow now, I eat Cream of Farina, oatmeal, softly roasted chicken or anything not spicy or soft! No Oranfe juice I c stars! I have burning tongue, cut up cracked tongue from dryness, little white dots on tongue that gradually get bigger as they go to back of tongue! I have several cold sores on my mouth and now my lips burn as does my tongue! I'm at whits end with this flare up, plus my RA is acting up! Have no feeling in hands drop everything and fingers swollen and painful joints! With all of this going on I must stay POSIY! I have my husband who has Alzheimer's, had aggressive bladder cancer, had heart attack during 2nd bladder surgery and went thru chemotherapy and radiation at same time! For past 2 years I've kinda been just rolling with the punches! Refusing to as for help! I have a mentally challenged Step Son whom I've looked after for 40 years now! He's my beloved Son! Finally I woke up and got some(very little so far) help! My husband was a Korean War Veteran that was disabled by a grenade! Lost hearing in one ear! So slowly but surely the VA here in USA is coming thru for me! There's a waiting list for an aide tho! They did tell me his Alzheimer's in stage 1 would get much worse at very fast rate after chemotherapy and radiation! Boy were they right! I've been overwhelmed by all this! Went to my primary physician and he said my body breaking down from all my autoimmune diseases in a flare! I also have heart disease and had left main bypass 18 years ago and I'm suddenly suffering from Anguna again! I take nitrostat and wait for test to be done! I pray it's not my heart cuz I need to be healthy to take care of my boys! I think just stressed out and I'll be fine! Pray for me please! I'm getting my 3rd new leg in four years! It's in heard of! They told me I wore my foot out cuz I'm on my feet way too much and don't thinknthese things are made for people with ants in their pants! Lol.. I look forward to new less painful leg! I'm sure some of you have other autoimmune diseases? What do they do for Sjogrens in England! Not many docs here know how to treat it or they don't know too much about it! Is it rare? Welcome Chocolate Junkie! You will find ur way with Warfarin and know what INR number is best for you! Kelly gave great advise as did Kirsten! I have a glass of wine lately at night! Never did b4, but got too overwhelmed and my sister who also has APS, suggested a glass of wine to relax after dinner! I did and feel ok about it, it's not overdoing it and relaxes me! I don't want to keep doing that, but for now it's ok! We r all in charge of our own destiny and we must make smart choices! Maybe not completely in charge of our destiny, but we can guide it and try to make proper decisions based upon what our bodies are telling us! We must answer accordingly! I wish Kelly in Texas the best and Arkansas Chocolate Junkie the very best! I wish Y'all the best! I come from New York, but love The South especially Nashville and Memphis! Was in Memphis and made wrong turn and ended up in Arkansas! Wound up not wasted, got gas in Arkansas at cheaper rate!!! Lol... GOD TO ALL OF YOU, MY CONRADES!!!
Wow. You have been through so much. I am so sorry to hear your story. I have no words and can’t even imagine. Being on these forums is definitely therapeutic. Thanks for sharing. Blessings 🙏❤️
Wow you are a fighter! Stay strong! You have had a tough road and keep going. Very inspirational to keep pushing forward. I only have the APS so I cant imagine all you have been through. Fight the fight! 🙌🙏
Hang in there Debb!!! Glad you are back with us. I’ve been diagnosed with Sjögren’s now also- but it’s not severe.
“Dat leg, tho...”
Man..,
I’m falling asleep 😴 right now and you know how my eyes get by this time of night. They are DONE. Can you remind me tomorrow...to tell you about hot teal and dilute apple juice?
I use a very good free IoS app called (unsurprisingly), 'My INR'. It sets reminders for tablet taking and INR bloods, I can log all results and anything unusual re diet or meds. It will also output to a text document or as a graph and I can share via email etc. I'm really glad that I downloaded.
I've been taking warfarin on and off for 41 years and continuously since 1990, it keeps me as healthy as possible; I used to drink in moderation without ill effect and also ate whatever I wanted, again in moderation. The key is to eat/drink roughly the same each week, then your INR will reflect your usual habits and your warfarin will stay fairly even. I hope you have a positive experience x x
Now I use this app but lost a lot of data during a recent restore and update of my phone. I can no longer find the app on the App Store either and have been looking for a new one that works just as well.
If you haven’t saved your results or emailed them to yourself from within the app, then I suggest you do in case you have similar issues to me.
I was diagnosed in 1995 as I had a DVT whilst on warfarin following a PE. I was under a fantastic haematologist at the time (Dr Deeble), I still miss him!
You say you had a DVT following a PE in 1995 whilst on Warfarin. What INR is your therapeutic INR now and what INR did you have when you had your DVT and PE?
As I am from Sweden I have not heard of the "unsurprinsingly My INR".
My PE was back in 1987 (I remember it well because it was the week before my wedding!) I had my first DVT when I was 21, in 1979.
My TR was 2.0-3.0 when I had my last DVT. It’s now 3.0-4.0 and has been since 1995. Like others on here, I have several other autoimmune diseases, but thankfully they are mostly well-controlled!
I think 41 years is the longest I have seen so far. Thank you for sharing. I also downloaded the same app and another one called medsafe to see which one was a better fit for me. I am in the US so I wonder if it is not available in the UK? That would be a shame.
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