INR on clear downward trajectory but Anti-coag keeping dosage the same and pushing tests further apart

[gazaeee]

I'd like to ask if anyone has had a similar experience with their coagulation clinic and if so what they did about it.

The team managing my dosage and blood draws seem driven to push my draws further apart at almost any cost.

My INR at my last 4 draws were in range but on a clear downward trend yet the clinic continue to push my draws further apart and without making any adjustments to my warfarin dosage.

Example:

28th July 3.0

20th Aug 2.6

14st Sep 2.2

15 Oct 2.0

16 Dec 1.8

Told to keep the dosage the same and return in 1 months time!

Surely they should either increase my dosage or ask me to come back in a week to make sure I don't go dangerously low?

I know that they are keen to reduce the number of blood draws but I feel this is putting us in danger. Each time I suggest they check me sooner or amend the dosage I get a cynical and arrogant response.

[Kempsh0tt]

I self test (Coaguchek) and email my anticoagulant clinic with results. I've always found them to be responsive, helpful and sensible with their dosage adjustments.

That's not to say that occasionally, I haven't questioned a dosage decision, a patient's privilege I believe.

If you have kept mostly in therapeutic range, are not changing diet significantly, or lifestyle generally plus dose as instructed, I would encourage you to do politely ask your clinic to explain why they are not changing your dosage to arrest the INR decline.

If no joy, try a phone appointment with your GP to achieve action and perhaps a health check. Most important, don't ignore. Good luck. TC

[Inchcock]

I'm afraid I'm in the same boat gazaeee. What used to be weekly tests, are now down to monthly. But I have been fortunate in up t o now, they have all been in the INR range. I tried to get them to see me up with a home tab-testing set-up, blow the cost. But with my having peripheral neuropathy, the loss of sense of touch and the shakes, they said a firm no. I could go private, but the cost would be prohibitive for the tabs.

I hope you have better luck. Cheers!

[loretta1106]

I feel bad for you. Once a month is not enough! I self test now and test every 2 weeks but also have had fluctuations fr low to high lately so testing 1x per week & adjust my greens instead of my warfarin. A doctor gets my results & if I am too out of range, she calls me & may make suggestions. Also I live in the USA & unfortunately we have very few Coumadin clinics. It’s either private lab testing or home testing.

[happy12345]

Been on warfarin for over 10 years. Testing is not often enough and changes can happen weekly. I self test and have done for a long time. I test weekly and sometimes I adjust my warfarin usually only by 1mg and my nurse is happy with this as she feels I am experienced enough. If I have any concerns I can call their office and arrange a test or discuss my dosage.You appear to be having blood draws can you not have finger prick test it would be a lot easier and convenient for you. I was going for blood draws for the first year to the hospital it was only when a consultant said why don't you have finger prick test. I had never been told about this and it is much better in my opinion. Hope you get it sorted it is declining you may only need an extra dose for it to stay in range they really should be seeing the pattern and adjusting accordingly.

[Jomomo]

RUN RUN RUN The same thing happened to me. I almost died from internal bleeding. My appointments would be at least 4 weeks apart each time. This was the first time I had been on Warfarin and didn't quite understand what I was dealing with. Within one of my month waits, I began to feel achy, lethargic, bloating in my stomach, and with lots of pain. I was rushed to ER and discovered I was bleeding internally and through my stomach muscles. I had a very large hematoma on my right side. Had I not gone to the ER I'd be dead. A lot can happen in a month and my INR shot up to 8! Normal is 2.5. Find another oncologist that will monitor you frequently. I refused to take Warfarin anymore. It is very dangerous if not monitored correctly.

[Mydvt]

I see that it's been 3 months from your post but just wanted to say that having been on warfarin for over 20 years self tester on 10mg a day that I would certainly would not feel comfortable just testing every 4 weeks. I normally test every 2 weeks, sometimes once a week if there are changes going on like being on holiday. Over this long time on warfarin I have found it interesting as to what can affect my INR, obviously alcohol, different foods, exercise, stress etc. but the beauty of self testing is that you can relax about it all because you are in control.