I have had APLS for several years, picked up after several miscarriages so was on aspirin and heparin for my last pregnancy and for 6 weeks after. After that just aspirin, plaquenil and other bits and pieces.
I had a TIA just after Christmas so they thought maybe I should be on warfarin long term. I felt fuzzy headed and dizzy for two weeks after the TIA until my INR got up over 3. Suddenly I felt better than I had in years!
My INR reached 3.6 so they decided to lower the dose. The next day I was back to feeling light headed and dreadful. I think I may have accidently halved the dose. I made sure I took the correct dose after that and started to feel better again but not as well as when I was at 3.6.
Today I was 3.0 and the dr was happy with that. I mentioned I felt better at 3.6 and he basically laughed at me and said the level made absolutely no difference to how a person feels. The warfarin just stops the blood clotting so quickly if you bleed and if you don't bleed no affect.
Well I resisted telling him my opinion of his opinion because I wanted him to pester my rheumatologist for an earlier appointment than April!
Okay...if you are still reading ...thank you! And my question is "does your INR level affect the way you feel?"
Also does anyone have any research I can show my dr to educate him?
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I believe you can but it is not something you can feel from one test to another but how your body copes over time. My theraputic is 3.5 and is where I feel best. Occasionally it dips to 3.0 or a little lower and if it is a dip I am usually ok. when it sustains fatigue and a lack of endurance kick in and it is these markers that tell me my inr could be low.
my inr range is now 3 - 4.5. When i go below 3.4 i feel dizzy, headachy, light headed, get loads of bruises, have crap co-ordination. Below 2.5 i also hurt myself and not feel anything, get really bad numbness, loose my vision in my eye.
Between 3.4 and 4 i feel WONDERFUL ( to a degree) but then strangely if i go above 4.2 i feel dizzy and light headed again!
Sadly, I also have Lupus which makes it extremely difficult to manage my INR it can fluctuate a whole 2 points from week to week!
Speak to your INR clinic, there will be a good nurse there who will listen to you as well as your rhuemy
Unfortunately my INR clinic is run by the dr (GP) and the nurse just does the finger pricks and records the reading and I can't get into see my rheumy for another 8 weeks.
Why is it always such a battle to get the right answers and treatment from our medical team! Why do we always have to educate them?
I am so frustrated today after that appointment.
I often think they will believe me when I'm dead. I want on my headstone ...."see I told you I was sick!"
My husband has APS & can always tell when his INR is high or low & NO, warfarin doesn't always prevent TIA's. He had 3 mild TIA's last year, and one that was rather significant. It usually breaks up the clots before any damage can be done, but some clots do get thru.
We also have the same problem with our GP that many here have described - she doesn't want to accept the recommended INR levels for APS patients. Some time after my husband was diagnosed with APS, I printed out Dr. Hughes recommendation of a 3-4 INR as compared to 2-3 for "normal" people. She left the room & came back with a different printout saying the INR for APS patients should be 2.5-3. We told her he felt better when it was 3.5-4. It has taken time, but she is leaving it alone when it is close to 3.5, which it has been staying at now for several months. We found that for him to get the best continuous reading is to take his warfarin every night since his blood test is taken in the morning, 12 hours later. I could be wrong, but it seemed to us that when he took his warfarin 2 hours before his blood test, it dumped the warfarin into his blood & thinned it quickly for a brief time & his INR was bouncing all over the place so his warfarin was being adjusted every couple of days. When he changed the time he took it, all of that stopped.
Just stand your ground with your doctor. You know what the minimum INR is that you can tolerate. And I hope you won't have anymore TIA's.
I can certainly tell when my INR is too high or too low and the way I feel differs dramatically between them.
First of all my specialists have all told me that for APS we should typically be set a higher INR range than 'normal' warfarin patients - that includes Dr Hughes and Dr Khamashta at Tommies and my specialists here in Madrid.
Secondly - my target range has been shifted when I have got very unwell from my Sjogrens and SLE (upwards) and then recently back down as my treatment has worked and generally I am doing better.
i.e. it is a personal thing as to what someone's best INR is and many of us get an idea of our 'ideal' like you have. Many drs will not be told and if my GP is not in then I always face an issue with the stand in when I turn up with my INR at 4 and feeling great and they want me to go 2 days without warfarin! OR worse, they won't listen when I have 2 and desperately need clexane to cover me while we get the INR back up.
Have confidence that you know better than them how you feel and 'accidentally' nudge your INR up if need be. Below ideal and I lose my speech, too high and I become twitchy and light headed - both give me a headache it differs in where it is and how it feels.
Enjoy the journey of finding the dr that will just let you be in control and tell them how it is (And then let us know where they are so we can all enjoy the pleasure!)
It sounds like most can tell a difference but some aren't as aware and I guess that is a fairly normal spread of responses as we all experience APLS differently.
I saw in other threads that the finger prick machines can be unreliable for us so checked with the lab that runs our clinic and sure enough they don't recommend the finger stick machine for those with apls! Why don't the Drs who run these clinics know this! Don't they read patient histories!
Of course being a weekend my normal Dr wasn't there but managed to get a referral for a blood draw from a different one. Have now had that done but have to wait two days for the result.
Yes - I do feel strange when my INR levels are low - light headed, tired, sensation in head, saw dr at St T and was told that it is due to low inrs. I am relieved when I hear of other peoples reactions to their INRs as sometimes one feels that it is only themselves. Also my late mother experienced strange feelings when her INR levels were low.
i also know wen my inr is on the low side, as my health n mood swings change. i get foggy memory, very dizzy, bad migrains n very tired. i talk to my doctor n clinic about this n they say that the inr wnt make a difference to hw i feel, it only thins the blood. if only they was in this body of mine, then they would actualy no wot im talking about.
I am convinced that there is a difference- but because of brain fog I don't necessarily recognise it at the time. It can kick in within quite a small margin, maybe .03 lower.
I get really angry reading the problems some are still having with their doctors about higher target INR levels. For those in the UK I would suggest, if they are having real problems convincing doctors, that if at all possible get a referral to St Thoms, or see Prof H privately (about £200 I think-best money I ever spent) None of my doctors now want to argue with Profs recommendation of a target 3.8 to 4.0, nor me self-testing every other day. They have seen the benefit for themselves.I have had some, well one cardiologist suggest it was an impossible target but normally I can keep pretty damn close to it. When surgery is suggested now I make it very clear that I need to go onto a heparin drip until a few hours before the procedure, and then on heparin injections straight after, so that the time my INR is low is an absolute minimum.
I bought my own Roche machine (I upgraded when the latest more useful one came out) and my surgery pays for my test strips. I think they have come to realise that, expensive though they are, they have saved a few emergency admissions or worse. I had three TIA's when my INR was over 3 (3.3 I think) I also have phials of heparin for immediate use (at a clinc or hospital) should my INR fall below 2.0.
I am now old and sensible enough (60+) to get right bolshy when anyone suggests I should depart from the regime set by Prof Hughes.
Sorry for the rant but I've had the battles and nearly been killed by them. Now I know better and I'm taking charge of that part of my life. For those in the UK, a referral to St Thoms, though it may involve a long wait, is your right as I understand the system-check with your PALS service. I hope others overseas have some similar rights.
Don't forget that the staff who look after your INR if you go to a clinic are not expert in your condition, they are only qualified to look after your INR and keep it in the range. Most of their patients will be straightforward DVT, or heart condition patients with a range of 2-3.
I was at the clinic last week and I heard there were nearly 100 patients seen that morning.
If they are not keeping your INR in range then you may need to get your consultant to enforce it. I found a few letters from the consultant to the GP copying in the person in charge at the INR clinic and myself were necessary. Make sure you get a copy so you can remind them what it says.
I have been on Coumadin for over 6 years following a P.E. I have suffered increasing inability to maintain my balance and now I am having serious memory problems, both long and short term. And when I say short term, I mean really short term, like my wife can tell me something and in 10 seconds, I can't remember what she told me. At the same time, my INR decided to drop drastically and I was hospitalized in order to get it stable. It went from 1.5 to 7.8 in 48 hours and has been bouncing like a ball ever since. I've had Leukemia and a Bone Marrow Transplant so this may some effect on my INR of which no one is aware. This is a real fun roller coaster and I've got needle tracks that would make any junkie proud!!
I've been on it for about 2 months thanks to a full leg DVT (up to the abdomen) - they are still trying to get me in a good range so I'm going in twice a week. Some beliefs my Nurse Practitioner has are: 1. Don't stop eating Vitamin K foods - we'll adjust the dose around your diet...not the diet around the dose. 2. When you take Warfarin (Coumadin) the results do not show up in your blood until 4 days later - which is why they will give you Lovanox injections (like Heparin) until you get the INR to a good range. Makes sense to me! I hit 7.3 yesterday on my INR and boy did I feel off - very, very fatigued. So I ate a big meal of brussel sprouts to help plummet my INR I'm off the Warfarin for 2 days I'll restart it tomorrow but at 5 mg instead of the 7.5 I was on. The best part is my NP has an INR machine - tiny prick on the finger and results in about 30 seconds! I think all Coumadin clinics should have this as a mandatory machine.
Hi, I have a lot of things to say to your comment above:
It is right that you shall not stop eating K-vit. It is good for a lot of things when on warfarin. It is vital to keep it CONSTANT if you do not want to change your dose when the INR when it is too high (eat a little more of vit K veg) or too low (take practically nothing of vit K veg for ONE day). You have to be patient with INR. But if you do that way with the food you can NOT ALSO change the tablets at the same time!!!.
As you say you had 7.3 and ate a big meal of brussel sprouts (that make the INR go down faster) and you are also off warfarin for 2 Days!!! You should be very low just now and need Fragmin or something if you did a test.
I am always tested in the vein. More reliable I have learnt. . Try to make notes, Very important. If you change drug, exercise, tablets ofcourse. But first more tests of the blood at the clinic and be CONSTANT what you eat. Always do very SMALL changes both in K-vit food and tablets.Be patient and wait. 48 hours. A little less with K-vit food usually.
I selftest and I never change my tablets. I eat healthy food with lots of coulours. Yesterday I was at a dinner and when I came home I eat the usual things that I used to eat in the evening (lots of different fruits. That is OK. When you are used to this regim you love it and when you feel good on it you love it .I do. I want to feel good. But I eat so many different things every day.
You can enjoy a visit to a restaurant (fill in the the usual things that day after the visit) but not 3 days in a row perhaps. That can mean a bit trouble.
The nurse is wise; she adjusts the dose around the diet. That is really good. Hope they let you have lots of test now the first months. You are new on it.
I have tried to explain a little. But we are all different. That is also very important to say.
they want my INR level to be between 1 - 2 i went for bloodwork and i got the results back the same day and my level was greater then 10 i didn't feel any different and i don't know what brought it up so high!!!
I have been on warfarin for over 6 years following 8 dvts in my leg, in this time I have realised a few things dispite what my GP says , I feel the cold more, when my inr is going up or down I feel ill sleepy confused, and it affects my balance, last week I was due for an operation to remove my gall bladder (which seems to have an impact on enzyms from the liver affecting inr), having spent a week of heparin injections coming off the warfarin 2pm on the Thursday the hospital rang me to cancel the op due for 7am the next day!! I am currently back on the injections to get back on the warfarin only to be told 4 days after I finish the heparin I need to stop the warfarin again ready for my new op date. I strikes me a lot of doctors do not realise how ill it makes you feel when your inr is going up and down like a yoyo. on good this is I have an excellent DVT clinic here who were not happy when I explained what is going on and have agreed to take over my inr management last time they got me in range in 3 days, my GP normally takes 6 weeks. anyway I am trying to find out what is the negative effects to long term health of an unstable inr if anyone can help?
I have been on coumadin for 16 yeàrs for a DVT in left leg ..and yes after reading these posts about dizzy spells losing eye sight and hot flashes migraines and so on I guess I am not alone...I have to be on it for life too...They tried putting me on xelto..but it made all my joints ache...
Hi, I'm not sure I am posting this right? I am incredibly excited to have found this thread. I don't have APS as far as I know. I had DVT last December and they put me on Warfarin for 9 months. I have had some sort of immune system disorder for over 20 years that has never been diagnosed. I have had episodes of extreme fatigue, body aches, sweats, cold sores, confusion, swolen glands, along with other symptoms on and off for 20 years. They usually last a couple of weeks and I typically have them about 6 times a year.
I have also had Non Hodgkins Lymphoma and pancreatitus in the last 10 years.
So a funny thing happened when I went on Warfarin; I didn't have one episode the entire 9 months I was on it. Healthiest run I had since I was in my teens. I went off Warfarin in late August and I have pretty much been sickly ever since (or about 1 week after I stopped). It has gotten pretty bad and I am desperate for answers. When I bring up the correlation to DRs they sort of chuckle and say it is just a coincidence. My wife is the biggest skeptic and even she agrees with me.
I remember pharmacist at Anticoag clinic mentioning that typically INR goes up when some body is sick as the body is reacting to the threat. That got me to thinking, if that is the case, then there has to be some sort of correlation. So I googled "Why does my INR go up when sick" and here I am.
If anyone has any info what soever that they think might be helpful, I would be very grateful.
I should also mention that in recent blood tests, it showed positive for auto immune problem, but nothing has been diagnosed yet. I have to wait 3 weeks to see the DR.
Hi, I'm not sure I am posting this right? I am incredibly excited to have found this thread. I don't have APS as far as I know. I had DVT last December and they put me on Warfarin for 9 months. I have had some sort of immune system disorder for over 20 years that has never been diagnosed. I have had episodes of extreme fatigue, body aches, sweats, cold sores, confusion, swolen glands, along with other symptoms on and off for 20 years. They usually last a couple of weeks and I typically have them about 6 times a year.
I have also had Non Hodgkins Lymphoma and pancreatitus in the last 10 years.
So a funny thing happened when I went on Warfarin; I didn't have one episode the entire 9 months I was on it. Healthiest run I had since I was in my teens. I went off Warfarin in late August and I have pretty much been sickly ever since (or about 1 week after I stopped). It has gotten pretty bad and I am desperate for answers. When I bring up the correlation to DRs they sort of chuckle and say it is just a coincidence. My wife is the biggest skeptic and even she agrees with me.
I remember pharmacist at Anticoag clinic mentioning that typically INR goes up when some body is sick as the body is reacting to the threat. That got me to thinking, if that is the case, then there has to be some sort of correlation. So I googled "Why does my INR go up when sick" and here I am.
If anyone has any info what soever that they think might be helpful, I would be very grateful.
I should also mention that in recent blood tests, it showed positive for auto immune problem, but nothing has been diagnosed yet. I have to wait 3 weeks to see the DR.
You have answered on a 3 year old question. I see you now. I am from Stockholm and I have APS.
First of all I would like you to look at hughes-syndrome.org/selfhel... in your area. Get a very good book of APS written by Kay Thackray. "Sticky Blood Explained" She has APS herself and writes of her symptoms so you can compare yours with hers.
Two things with this illness (as I guess you have it because warfarin helped as soon as you started and your symptoms returned as soon as you stoped warfarin) is to get a diagnose. The other thing is the importance of getting a special APS-doctor. So few doctors understands this illness. You may see the APS-doctors in England on the link above. It is utmost important to get an APS-doctor!!!
You may come back to us whenever yo like to. I am going to bed in Sweden now. Have a look at -----! (above). Where do you live? II am sure we can help you.
Thank you for the reply so late. I don't know what time it is there? I am in Portland Oregon USA. I am going to look up that book right away. Thanks again.
Hi, glad you have found the thread useful, but as my co administrator mentions this is an old thread, unfortunately new posts often tag old ones underneath which can be a mixed blessing. Please look at our pinned posts on Sero Negative Hughes Syndrome/APS many members have Hughes Syndrome/APS without the clinical tests working for them. Also please make sure you see a medical consultant who understands Hughes Syndrome/APS. apsaction.org/ you may find a name to telephone on here, otherwise if you head a post asking if anybody in the USA knows somebody in your area, this may help. Best of luck. MaryF
Look at apsaction.org (APS-doctors in different countries) if you live in Oregon, USA
We have many members from the US here but you should put a new question because now you have answered on an 3 year old question and the others might not see you. How to do it I can not explain just now as my English language is not good for techical questions. But stay on here, we will help you!!.
I also feel better with a slightly higher inr. Around 3.5-4 seems like the sweet spot for me. If it drops below 2.5-3 I feel dreadful. "Thick" headaches those ones that feel as though you have been drinking or a massive storm is coming. Although I had a scare a month ago. I was feeling a little off, I thought maybe my inr had dropped a little (I have been on coumadin almost 10 years) as I had cheated a little and had extra salads that week. 3 of them to be exact and one was a large spinach salad, I had also had a big craving for v8 vegetable juice and had been drinking a glass every day to quell my desire. So me thinking it was low would have been a valid thought
I had my test and a few hours later my Dr called three times. I was on a call at the time with our insurance agent and it was important so I let voicemail pick up. I wondered why he kept calling. I hung up and listened to the last one left. My Dr sounding very upset and concerned and telling me to call on his after hours number as my inr was 16.5!!! He needed to let me know about taking emergency vitamin k.
I went to go and get it, for a decent sized town of a half million people and almost as many pharmacies, thy couldn't find anywhere that had it in stock. Until one tiny place that looked like an old timey soda fountain place called and said they had it. Went and took the 10 mgs and tested next day. Dropped sharp to 4.4 and following day to 3.3. That was a wake up call. I still listen to my body. But now I am not quite sure what it is saying
I have Hughes syndrome and I definetely feel better when my INR is over 3.5. I do a test at home whenever I feel my symptoms change and I can usually tell when the alter. Until recently going through the menopause seems to have affected everything have just discovered my INR is 6.5. When it gets to 5 I usually have headaches but this time I had very little symptoms to warn me. But I believe it's different for everyone.
My INR is not where they want that to be. (between 2 and 3)
Last 2 weeks it went up to 3,3
My balance was better, almost normal,very noticeable to me.I was trying to find out if there was a connection with warfarine. May be it was the 3,3 INR...
I cannot be sure, but l will make notes , follow up on that, tell the doctor.
I have occasional Afib.I am very healthy other than that,at age 83. I dance.
You have just landed on a 3 year old question about INR.
I see you are 83 and dance. GOOD!
I am only 73 but I have Hughes Syndrome/Antiphospholipid syndrome (HS/APS) like all of us here.
Have you also a diagnose of HS/APS? I see you have got Afib. Is it therefor you are on Warfarin with that rather low INR or is it also for this illness we have here with too thick blood that has to be thinned? Have you got a Specialist for our illness?
Making notes is always good. If you have got HS/APS it is more difficult to keep the INR in range. Tell us please which you have or if you have both?
No ,I don't have HS/APS or never diagnosed. I have good ,normal heart muscle. Afib is the only reason for warfarin. I hate taking it , but I wouldn't take others,like Equise.
My balance e is better- actually good last few weeks.
ABBA was a trio very famous here in Sweden in the middle of the 70th and later on even i Australia and England. Björn, Benny, Agnetha, Frida. Their best song was "The Dancing Queen!
You have written nothing on our site so far. I think you should put a question our our site as to your HS/APS and tell us a little more about yourself.
What I read above is that you are staying on a too low INR with this illness. I selftest and need an INR of 4.0. to feel ok and not have further TIAs, DVTs PEs etc.
Wish you get a Specialist of autoimmun illnesses who understands how we are to have as patiens. We can have seronegative antibodies and micro-clots and emboli that are not seen on a Scan etc.
Reading through sounds like everyone has the same problem one way or the other. I had a massive stroke almost three years ago which left me legally blind. During that they found I have a rare blood clotting disorder, therefore on coumadin for the rest of my life. I have a rare form of lupus which doesn’t help among many other issues. I am not able to get out of bed when my number is below 2.5 and then I try to tell them I feel my best at a 3.0. My neurologist and the clinic tell me my number has nothing to do with how I feel. I will tell you before my stroke they took blood and it was so thick I asked the lady about it, also I was complaining of falling asleep during conversations at home and work. Now you tell me it doesn’t make a freaking difference, those are our first clues. Who knows our own bodies better than we do anyway????
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