I had one doctor who had my INR target 2.0-2.5 and I always felt worried because if it went over a tad she changed my meds. Now with new doc I have a target of 3.5 when I told her I'd rather stay in that range. This week it went to 4.2 and she took me off warfarin for two days and will see her again in 3 weeks. I know when it's high 3's I feel better but now with 4.2 I have some a couple of large black and blue marks. I definitely bruise easier on warfarin. Does anyone else experience this. I was playing with my grandchildren last week and probably got a couple of bumps but don't know.
I live in New York City and we don't self test.
I love this forum. It's helped me so much.
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loretta1106
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Long time now since we "talked". Good to hear from you!
Do you have a Specialist of Hughes Syndrome this time? I do not understand that she took you off Warfarin for two days! An INR of 4.2 (guess it is in the vein) is not such a high INR. Would say it is quite normal as my therapeutic range is between 3.5 - 4.0. Yes when the INR is at the high side you see the black and blue marks more often.
I wonder what INR you will have in a couple of days, too low I would guess - what do you think?
Did she say when she wanted you to test the INR after two days without Warfarin?
I wish you could selftest. How often do you test the INR in the vein or by fingerprick?
For me a veintest at an INR of 3.5 is too low because I have had several symptoms when on an INR of 3.4 or perhaps higher once. I need to be on an INR around 4.0.
If I were you (but I am not and you do not selftest) I would have cut down my tablet with 1/4 of a tablet (I take 5 mg, 2 tablets/day) and 2 days later I would be on an INR of perhaps 3.7.
But we must not forget that we are all individuals with different antibodies and autoimmun illnesses also and need different amounts of Warfarin as to our weight etc.
I am surprised if a Specialist of this illness advises you to skip a dose of 2 days with Warfarin though! I hope you test your INR very soon and tell her if it is out of the therapeutic level. I hope you have a Fragmins-shot to take if the INR goes under an INR of 3.0. Take care!
It's great to hear from you and thank you for your reply. I have a quick test at my internist's office. I'm seeing her again on March 20th. I usually test once a month unless my INR is way off. My rheumatologist monitors my blood work for APS my INR and she's the Director of the Lupus Dept at NY Presbyterian Hospital. I'm seeing her on 3/22 after which I want to see Dr. Michael Lockshin at the Hospital for Special Surgery in NY. He was recommended to me on this site as an APS specialist that knows a lot about APS and that's rare. NY has a lot of doctors that know a little about APS but not a lot.
My former internist insisted on keeping my INR around 2-2.5 and I convinced this internist that after researching, I'm better at 3.5 or even a tad higher and she listens. She now has my therapeutic level at 3.5. They don't do fragmin shots as far as I know. It's frightening how little doctors know about this disease. That's why I'm hoping Dr. Lockshin can see me and I'll bring all of my blood test results.
Fragmin is called Lovenox in the USA. ( Loretta, i live in Texas.)
Kersten, if you remember, two weeks before I went to London to get a consult from London Lupus Centre, I saw this same practice Loretta is talking about at the HSS - Hospital for Special Surgery- in NYC. Dr Lockshin. He is not the dr I saw, but he is in the same practice. If Loretta has " persistently" high titers ( 40 or higher) and does not fluctuate from sero pos to sero neg with regards to aCL and beta 2 glycoprotein 1 anti bodies - she should have a susessful trip If Lockshin thinks along the same lines as his college I saw. Of course we know the Lupus antibody is simply a pos or negative test- so numeric value range to interpret.
Self test kits do not even enter the thinking of our doctors here. ( not that I have experienced.) I had to ask my internist for one. I'm lucky he is reasonable. He monitors my INR with a coagucheck xr between hematology Appointments. My insurance didn't cover it... we tried. $650.00 unfortunately. We ordered it new off of eBay. But it was through a medical company in Wisconsin. My hematologist would never have agreed to it! It's always spot on with my internists machine. ( it's exactly the same machine.
US hematologists are not keen to prescribe Fragmin here in the USA as readily as in Europe. They are not as trained on APS here. They are also not understanding how easily we clot. They are very certain we we have immediate brain bleeds...they are only going off the 2006 revised Sidney Sapporo Criteria ( flawed test results please reference some of Dr Hunts talks- ill give you specific details if you'd like) and want the INR lower than might other wise be safe for some patients.
Thank you Kelly for that message to me who is always nagging about high iNR!
I think that mostly it is useless when I try to tell members to take LMW Heparin or selftest if on Warfarin, otherwise the anticoagulation is useless.
What I do not know is how important it is (as to INR going up and down a lot) if you are Lupus Anticoagulant, having several of the antibodies positive and also if you have high titres of the antibodies.
I am very erratic and have Lupus Anticoagulant, triple-positive for 14 years and with persistant high titres all the time.
Perhaps it is easier for you to keep the INR in the therapeutic range (which we now know is very important) but you do not selftest or do not test in the vein often enough so you do not know how erratic your INR is in reality. My INR change in two days from 5.4 to 6.4 and actually this time I did not have a clue why on earth it happened!
I ate 11 brusselsprouts in the morning after the bloodtest at home and in the evening the same amount of green vegetables as I always eat.
There are other members here who are triplepositive who also have problem to keep the INR at the right spot all the time.
I tell others here how to manage the INR but perhaps they are always at the same INR and have no problem at all. But do they really know as they do not test often enough. I wonder .......?
You are right! I only tell you this so you can understand our particular and unique ( and unfortunate) struggle in the USA . Last night my self test INR was 2.5
I should have taken a Fragmin injection. I only have 4 left. Professor Hughes instructed an inject if I fall below 2.5 or less. I'm still trying to get a new hematologist. I haven't heard back from his office yet. I hope my internist will prescribe the Fragmin in the meantime. I'm not even sure. I'm hanging on to it until I fall below 2.2
That's when my seizures and small strokes get worse...
How horrible is it I even have to write that sentence? Not to mention deep vein thrombosis?
Keep nagging!!!! And quit calling it nagging! You are " persistently informing."
My GP, a saint who reads Hughes Syndrome info I bring him, provides me with prefilled syringes of lovenox to use when INR less than 2.5 or for when I have to do a bridge, like for pacemaker surgery. Every time I have had a TIA, my INR has been below 2.5. In hospital a year ago, an overzealous MD stopped my Coumadin cause INR was 4.3. The next am when lab drew my blood, it CLOTTED in tube before lab could run into. Needless to say, I carry lovenox with me when I go to hospital and I tell all staff I have it and why. Nancy
Nancy you're so fortunate to have a doctor that watches so carefully. I always got scared when my inr got near 2.0 or below and mds alwsys say it's normal-After reading so much on this site, I know I should be higher.
You know, I figured out about 15 years ago that when my inr was in low 2's, I didn't feel well. Gradually we've increased it from 2-3 to 2.5-3.5 to 3-4.5 just in the last month.
Reading info on Hughes site has made me realize that maybe the constant headaches are not gone cause inr not high enough. My GP agrees with this change and he is the one who put me on Coumadin in 1996 so he is in charge. However, hematologist gets real nervous when it gets near 4. I'm gonna have to be diplomatic with him cause he is a nice guy who got me thru cancer 15 years ago.
Keep up with this site cause they have the most up to date info. I got info from them last fall that kept me from switching to xarelto. Nancy
I would have thought with an Inr of 4.2 they wouldn't have skipped a dose at all but reduced your current dose and retested within a week. Seems very odd to skip two doses but not retest within a week. Personally I wouldn't have agreed to it but my clinic takes on board what I think of any changes.
It's so different here in the US. They know so much more in England and self testing is allowed and the patient seems to have more of a responsibility along with the mds.
Hi from your latest post it sounds as though you are now in the correct hands even if you have to wait to see them in a few months. Bruising is normal when your INR is higher but it can also happen when you have a knock you cannot remember. I had a big bruise after playing with my granddaughter but couldn't remember how I had done it. My doctor and pharmacist said to be aware of unexplained bruising and get INR checked. Please don't run away with the idea that self testing in the U.K. Is the norm it depends on the area and the GP practice. I have to go regularly to my GP for INR checks. I have asked for self testing but have been told it is more costly for the practise than me going into them.
Hope you get some good answers from your medical team soon.
I was given the same advice by my GP and anticoagulant Nurse to get my INR checked asap if I had unexplained bruising. I go to my GP for my INR checks and I've asked them and my haematologist about self testing and they have both said no for similar reasons.
Do you live in the US? I mentioned my bruising to the GP and was told it's normal with high INRs but each GP has a different opinion on what is a high INR.
Self testing isn't that common in the uk either and many Doctors have no idea about Aps. I don't self test but the clinic would always give an appointment for a weeks time when telling you to miss a dose as a lot can change in a week.
I had to miss a dose this week and had my dose reduced too and will be checked in a week. My Inr was at 6.2 but they've disrupted it all by adding in Aspirin as I unfortunately had a stroke with an Inr of 4.00. Most unusual but my only real symptom of Aps is Strokes. Obviously they need to keep it as high as possible without tipping it into being too high while they figure out what's going on. Even at 6.2 I don't bruise as we're all individuals.
You can self test too if your doctor writes prescription for meter and strips. Depending on your insurance you may not pay much. Depends. I have only found edgepark that deals with meters in US. Got first meter in 2007. Need new Meter now cause INRatio meter recalled. Edge park now sells Roche CoaguChek. Nancy
I know see that you you are going to see Dr Michael Lockshin very soon. Very good and then you will be treated as a Hughes Syndrome-patient which you are not at present as to the INRs.
Good Luck and please let us know how it goes after seeing this Specialist who probably can help you a lot with your illness and put you on the right treatments. Fingers crossed you will see him soon!
Kerstin I first will see my regular rheumatologist in late March and wait for the results of her blood tests so that I can take them with me so I hope to get an appt with Dr. Lockshin in late April. HSS is a distance for me but doable for good care. I read some of his work last night and I'm very impressed with him and his APS knowledge.
I agree with Kerstin and Tucson, skipping warfarin for 2 days will cause such a drop in your INR it will take some time to get back on target and would be safer if you were taking Fragmin shots until you were back in range. I have an INR range of 3.5 - 4.5 and feel so much better when INR is high 3s - low 4s. I bruise easily and always seem to have colourful bruises on my arms but they are painless and disappear eventually. I self test and manage my warfarin dosage and wouldn't have it any other way. I had to fight my warfarin clinic and GP for self testing but with the support of Proffessor Hughes and Dr Baines ( my specialist in Scotland) I bought my own Coaguchek machine and started self testing. I changed my GP to another that understood the importance of self testing for me,
Avril
The criteria for establishing the therapeutic anticoagulation range for APS varies by a number of factors including the number and location of thrombotic events, symptoms, etc... so if you have a single thrombotic event and are aPL Antibody positive you might be targeted at 2.0-3.0, after a second event 3.0-4.0 and depending on other symptoms ..i.e. TIA's, bruising, gum bleeding, etc. might be adjusted up or down a bit in the selected range....APS specialists are best educated/experienced to carefully listen and observe and recommend a range and then allow your PCP or hematologist to monitor the anti coagulation therapy range. A 2 day discontinuation might be appropriate-or not...depends on your history of INR stability-or not. In NYC you have access to excellent APS specialists at Hospital for Special Surgery. If it is too difficult to get there, the providers there might recommend a fellow they have trained in your area.
I had a stroke in March of 2014 and that time I was diagnosed with APS and Undifferentiated Connective Tissue Disease. My ANA has been positive for years but quadrupled after my stroke to 1280 then has gone up to 2000 and down again but stays positive. I think the last blood test was at it lowest since the stroke at a little over 600. It's been a journey for sure and I'm grateful for this site and the knowledge in it and the doctors I've had even though they are not APS specialists and now that I've found Dr. Lockshin, I'll embark on another journey to better self-care. I'll also discuss self-testing with him but I think the hospital and MDs here get more money for blood test through labs and quick tests as they can bill for those and not for self testing.
My INR yo-yoed all the time when I was with my first hematologist. My current one does not adjust meds if a smidge over. Sometimes he'll tell me to eat a big salad. My range is 2.5-3.5. In addition to APS, I also have a mechanical heart valve. So, the blood thinners do double duty. When I've gone up to 4.2, they've had me hold my Coumadin for a day or so and then re-test. It sounds like you won't re-test for a few weeks. Is that correct? I'm in DC. I tried self testing but it didn't work out. Apparently, the "reagent" the machines used didn't work well with my anticardiolipin antibodies. Many people on this forum do home test successfully. I recall I had to pay for the machine up front and get reimbursed by my health insurance. As for bruising, we joke that all anyone has to do is look at me and I bruise. So, I started wearing a roller derby team t-shirt. People just assume since I'm tall, that I play roller derby and the bruises are from that
I love the roller derby shirt idea as I recently told my daughter I have two new huge bruises and I have no idea where they come fr and they just "pop out." Yes I will retest in 3 weeks. I've basically been doing well re INR fluctuations. APS is not fun and especially w so little known about it here. I keep saying that a really famous person has to be dx then maybe people will be more interested in it. 🙂
I am in Huntington WV and I have self tested since 2007. When I found others with APS were self testing, I got my GP to write me an order for machine. But you routinely have to get a venous blood draw and compare with point of care machine (within 3hour window) to be sure of accuracy. A venous draw for comparison every 2 months or so, whatever your doctor thinks is reasonable.
Edgepark currently provides INR meters in the US and work with your insurance on meter and strips. Only meter I am aware of in US is coaguchek by Roche. The INRatio by Hemosense has been recalled and is no longer available. If the meter is accurate for you and you can afford it, it is very worthwhile.
This site is so helpful. I have learned so much in a short time. Nancy
This is very helpful as I am going to see a rheumatologist who is an APS specialist which my current rheumatologist isn't. She's great but a lupus specialist. Maybe the APS specialist will allow me to have a self check machine. How often do u test yourself?
Self test weekly if inr numbers are good and meds are stable. However, I am on antibiotics frequently due to a coexisting immune deficiency so when this is the case I test every 3 days or so. From experience I know levaquin (antibiotic) increases inr. Therefore when I start levaquin I cut Coumadin dose in half and check in a day or two. My inr can be "brittle".that is the way we described diabetics whose blood sugar jumped way up and way down without changes in insulin or diet. I think of my inr as being brittle.(I was registered dietitian at local VA hospital for 20 years prior to disability retirement due to APS). It can change quickly in 24-48 hours. So I avoid big changes in Coumadin. If I have an inr of 4.5, I might cut warfarin down but not cut it out because from experience I've found that inr drops 'like a rock' if I cut too much. Everybody is different. I've been on Coumadin 21 years so I'm used to how I respond to it. Nancy
I can't imagine have diabetes and APS. It must be awfully complicated with the meds and sugar and symptoms. Kudos to you for managing it all. Have a good day. Loretta
I never bruise at all. I still have blood that sometimes is too thick to get into my diabetic test strips even with an INR of 3.9. I must have super-thick bloods. I never have problems with bleeding at all. I also get symptoms when my INR is under a 2.5. I wish I had Lovenox injections for an emergency, but I would be laughed right out of my doc's office if I even asked him. So, I like most have purchased a self-tester online and I now keep my INR stable between 3.0 and 4.0. I've almost completely cut my doctor out of the picture as I only go for a lab test once every 4-6 weeks. I find it much easier to monitor my own INR here at home. I don't live in perpetual fear anymore. I don't consider a 4.0 to be a high INR. Also, I do not correct my INR when it is 4.0. Not unless it climbs higher. Most times when my INR is that high, it is always lower on the following weeks test. I only make adjustments to my Warfarin dose when I see trends happening. If I am trending higher and higher on my INR, or lower and lower; that is when I make corrections. Now if my INR is too low, obviously I will up my dose immediately. But if my INR is say 2.8 one week, and then back above a 3.0 the next week, I do not change my Warfarin dose. I hope you feel better.
You're lucky u don't bruise. It sounds like you're doing a great job self-testing. I would. Feel better knowing my levels more often. Keep up your great self care. When my level is in the low 2s I get very tired.
Hope you have doubletested with the vein-test several times (within around 3 hours time) so you know that the iNR on the machine is not too high. If I have 5.0 on my machine I may have 4.0 in the vein.
Hi blizzard2014 thank u for your post explaining that u do not change your warfrin amount very often and that works for u. I test every other day and i think i change my dose to much. I am going to give thiuch go so thank u for your comment ☺
I had another INR of 4.1 and skipped half a dose and my INR dropped to 2.5 in a day. So, no more panicking for a slightly higher INR. This is the first slip-up I've had in a long while. I will re-check in a few days and hopefully be back in range. I started to develop splinter hemorrhages on my fingernails which prompted me to test my INR. It was low as expected.
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