Hi advice please: Saw one of professor Hunts team yesterday for 3rd time, as always supportive and informative. Warfarin unstable so prescribed fargmin to inject when below 3, also suggested getting machine to test myself due to INR levels ever changing. Went to local anticoag clinic today who informed me that if I get machine they will not take my reading or dose me from it, they also said cannot see need to test me more than once a week and when on the rare occasion my INR goes over 4, no matter what St Thomas say they will just stop advise for a dose! When I said that St Thomas were the specialist in APS and I valued their opinion they informed me that whilst St Thomas may be good at research they were old fashioned in thier treatment (A statement I completely disagree with) and I was not the only person with APSvwho needed treatment and I was no different to others on Warfarin. Sorry for long post, I just feel despondent as feel ill when warfarin dips below 3.5! Any ideas pkease
Warfarin stress: Hi advice please: Saw... - Hughes Syndrome A...
Warfarin stress
What is your therapeutic level. Mine is 3-4. You sound like yours is up there as well. They put me through 3 different blood thinners 8 different times until they decided to give warafin another chance at a higher dose. I have to get my blood checked once a week as well, but my doctors say what your doctors are telling you that the ones on the market to buy will not give you an accurate reading.
Yes my level is 3 to 4, my concern is that my anticoag clinic made it clear they will follow standard guidelines rather than any advice from St Thomas's!
Hi,
Are you Lupus Anticoagulant? Can make selftesting more difficult
Do you intend to buy a CoaguChek XS which many members like myself use. I have an INR between 3.5 - 4.0 and feel best around 4.0 like you obviously.
I decide about how many times I test at home and manage on my own now. Have selftested for 5 years now so I know how to do it even if I am Lupus Anticoagulant. You have to learn and also doubletest several times as there can be a difference between the two readings (machine-test in finger and vein-test at a hospital lab). That you have to find out. I test every second day.
Good Luck
Kerstin in Stockholm
Thanks for your reply. Not lupus anticoag as far as I know, just APS! Yes was planning on getting coagucheck. Have just completed machine test and vein comparison for anticoag clinic as prior to involvement from proffessor Hunts team my clinic refused finger testing as said not accurate for APS. Even after steady comparison and written confirmation from DR Hunts team they still took a lot of persuading. 🤔
I ask you of Lupus Anticoagulant that is one of the three antibodies you test for to get a diagnose of Hughes Syndrome. It is not the autoimmun illness "Lupus."
I do selfdosing also after half a year with doubletests at the hospital lab. But in that case you should have the possibility to take tests when ever you think it is necessary to know "where you are" with your INR. You need enough of strips then!
Kerstin
When I was on Warfarin and self testing my GP allowed me to self manage (i.e. self dose) too. That way I had no need of the Warfarin Clinic. Dave
Hi Dave was it just through experience and self knowledge that allowed youvto self dose?
I'm same as Dave. I don't go to a clinic. I self test and self dose. My gp has given me spare inr forms to go the general blood test clinic if I'm out of range but the results go straight on my patient access app and I can change my dose. My gp is always on standby if needed.
I personally wouldn't trust an anticoagulant clinic who refuses to listen to the experts. We are not the same as everyone else and by following that rule we could come to harm!
Good luck x
Yes, my GP shadowed me on it for a few weeks, with lab tests alongside my own testing and dosing. Dave
Hi what a pain, what I would do is phone professor Hunts secretary, she is lovely very helpful ask her if professor Hunt would be able to send your hospital a letter or send you one explaining that the treatment is Warfarin/ Clexane when INR below 3 maybe they would feel better about it coming from the experts, a lot of people use the coagucheck machine its brilliant.
another way ? Also might help is for your hospital to write in your notes that going against treatment advised by st Thomas's eg, not to self test and they are happy to take full responsibility for any outcomes, I think the first one is best.
Good luck
I can't offer u any advise, only agree with what u have said. I fought to have my inr raised to 3-4.5. They agreed I should inject Clexane when I am below 3. They panic when I'm over 4.
The major issue with me is that I am so erratic e.g. I had a reading of 4.3 the next week 4 this week I started to feel really ill again and sure enough my inr has dropped and is 3.3. I have a headache, hurt everywhere, my upper legs are excruciating and I have no energy.
I know that self testing would be best for me at least twice a week as this could prevent these awful dips. But if I do that not only will I need to buy the machine and strips the local anti coag clinic won't see or advise me, meaning I'll have to go into the city if I need help.
I think we will never win yet we have to keep fighting on. Good luck 💋
Sorry Wendy... I'm still always thinking of you here in Texas. ( it's cloudy and rainy. All week. Darn, I can't tease you with our warm sunny weather this week. I suspect I'd be better off in England! ) just you wait. All summer long we are going to be melting and blistering with the scorpions and rattle snakes while you lovely English lasses stroll about in lovely 78 degree Fahrenheit perfection. Yep.
I'm in a flare these past three weeks too. INR dipped. I was up to 16mg three times a week/ 15 the other 4. Got INR up to 3.0, 3.3!!!!! Yay me!!! For about a week! ( I have a self test kit ) I inject with Lovenox LMWH if I fall below 2.5
I fell. Didn't stick. Horrible migraine 8 days straight. Horrible arm pain AGAIN.
( I fly to London to see Natasha Jordan at the London Lupus center. She is my primary consulting Rheum She and prof Hughes set my INR at "at least" 3.5)
Anyway. I reclotted during this time. Smaller DVT than last time- but another DVT April 1
Now no more Coumadin. Only the Lovenox injections. I'm still having a lot of trouble. Might not yet be strong enough.
Wish me luck. On the Texas heat..( its coming... ) and the transition to straight LMWH!
Sorry Kelly, glad your going to straight LMWH, you probably should be dosed every twelve hours instead of just once per day, as the once per day dose isn't holding. You don't want to suffer the possible stroke due to too low of dose. Good luck. Keep us in the loop
Holahans nurse clawed back with Lovenox levels yesterday afternoon. She said they were fine- slightly on the high side but since APS patients tend to clot- he's ok with me slightly on the high side:
Anti Xa =1.64
So keep the amount the same: 70ml once a day. I inject at 9:00am so that when I do draws it's always at 1:00pm in SAN Antonio- exactly 4 hours after an injection.
He is drawing me every three weeks.
Maybe he could divide the dose in half and you take it every twelve hours for better coverage
He said it's adequate. Let's see.
Ha ha! Maybe u best relocate here for the summer.
I'm sorry to hear u have been so poorly again. It does sound as though ur inr needs to b higher. I feel iller as soon as I dip below 4. I know. Efore im tested. We have a fame now where the tester asks me to predict. I'm usually about righ! I think we get to know r bodies.
I can't believe u come all the way here to see a specialist.
If u private message me ur email address I will email u the info I used to help them understand what was happening to me and as a result they agreed to raise my inr. At least now I have periods of time feeling better and there's a low chance of another clot.
Be good to chat too 💋
I think you may not quite understand correctly between spotty messages. I reclotted ( small DVT thankfully! No PE!) on April 1. (my INR indeed kept dipping .)
I was immediately switched to heparin ( LMWH ) exclusively.
The 1.64 is a value of the anti Xa, not INR .
The INR is 1 again. Wafarin is totally out of system. No more Wafarin At all.
My INR had been set at 3.0 to 3.5
I was on 15/16 mg if Coumadin ( Wafarin) through the week. Still my INR would fall. I had been bridging with LMWHeparin if I fell below 2.5, but it was not enough.
I seem to be lucky with my Anticoag clinic. I go and have a vein test twice a week to check inr ok. I inject if it drops below 3.2 as I have had Tia's at 3.5. I have just purchased a self test machine (coaguchek) and the clinic are showing me how to use it and we are still doing vein test so we will know the difference between the two procedures. It is great to know that if I feel not too good I can check my own inr and then give them a ring to let them know.
Thanks for all your replies. Spoke to nurse specialist at St Thomas's today. Asvised me to go to GP to see if they will work in tandem with St Thomas's. If can get agreement St Thomas happy to manage and will do so with my own machine and readings. Watch this space!
there are lots of different categories of aps patients even with regard to warfarin treatment (and plenty of people on other anticoagulants) - e.g. My inr range is 2-3. So to say we are all the same is, not very bright.
Not all clinics / services support self testing - mine didn't for first six months or so, now i am on a "trial". However, you can buy the kit and self test without the clinic being involved (you will probably have to buy it anyway). If your specialist has said to inject when under based on self testing, then no one can stop you doing that because you are under care of specialist and following instructions.
the other thing self testing (with or without clinic) allows is managing your inr through diet. My "normal" diet before warfarin would include spinach pie or pasta but only every month or so - wouldn't work with warfarin. But now I have spinach when I am over - and it brings inr down faster than a dose reduction, so usually I never need to take one. Alcohol can be used to get inr up - lmwh will have equivalent effect faster.
The clinic don't manage your diet/alcohol consumption, and I find that managing inr that way is easier (24-48hrs to see the effect, can be over a week for full effect of a dose change) - but you do need to be self testing.
Ray, aren't you concerned you may eat too much spinach and then cause blood to clot, how do you manage how much spinach to retaliate with, how do you know what safe amount is?
I only eat a normal portion and i know from self testing how much it will knock it down. The clinic will work out the expected effect of a dose reduction using your history, you can do the same with your self test results but you can test far more often so have more data. Either way until you have data it is guess work - but at least you have fragmin if you test low.
Lynn, i thought you only took fragmin?
Thanks, as your history helped me to make my decision. You alarmed me😉 I didn't realize it was a quote but now I understand
My hematologist said Fragmin and Lovenox are slightly different- but only slightly. He said it's basically " the difference between Coca Cola and Pepsi Cola."
Those on Warfarin... How often is your INR tested? Also, what are the other blood thinning options?
Can you help with a research trial based in London?
no more clopidogrel but on warfarin
Switching from warfarin to Rivoroxaban - INR needs to be below 2.5
