Warfarin INR - too high but infrequent monitoring

Hi, I think you are right that your Anticoagulating Clinic is not safe at all. Not for you with APS. You are also talking of a break in the beginning. You stopped the Warfarin after you had started it! I have learnt that you must never stop warfarin but perhaps it is different at the very beginning

I hope someone else will answer how you are going to do with this problem.

I do hope you have an APS-specialist that understands your illness. You are well aware of your situation and that sounds very good indeed. Please come back to us and tell us how it goes for you.

I wish you luck. Take care. Kerstin in Stockholm

Hi Kerstin,

Thanks for that - it kind of confirms my suspicion. The Lupus Unit at St Thomas's (Professor Khamashta) is seeing me for the APS - but the Anti-Coagulation clinic is local.

The warfarin was stopped a week after starting because I got loads of rashes and got quite ill. I was put on rivaroxaban instead. I continued to get even more ill - so I stopped that. Then three weeks later I was still feeling like death - and worked out the illness was coincidental and not due to the warfarin. So I started again. The rash has gone (it could have been a Lupus flare though I tested negative for Lupus) but I am still quite ill. Part of this is a nasty flu.

On the other hand warfarin has improved some very long-term symptoms spectacularly. Heparin works well with me too - but I would prefer not injecting if possible.

The INR clinic monitoring frequency seems to be a case of one size fits all - no matter that you have never been in the target range.

Hi, I hope I can follow you now ...... You are on warfarin and you are not ill because of the warfarin, Good. You do not know if you have had a Lupus flare. You have part of a flu eventually.......The Warfarin has improved a lot of your symtoms spectacularly......( It did that to me also.) Good.

So I would say that if you have a coagulation clinic that can work together with your doctor in charge of your APS (prof Khamashta at The Lupus Unit of St Thomas´s ) you would be well.

So if I were you I would have a talk with prof Khamashta and tell him this. He will certainly understand that you must have help.

Take good care . Kerstin

I have recently moved from my local anticoagulant clinic for that very reason. I was not happy with their lack of knowledge of APS, they would leave me for weeks between tests, had no idea how to deal with a TIA, yet they did not approve of me self testing.

I now see a haematologist at the same hospital as my rheumatologist and the anti coagulation clinic there is happy for me to self test, with 6 monthly visits to calibrate my machine.

Yes. I am seeing Professor Khamashta soon. My appointment has been brought forward from November to June 20th. The reason is the local hospital has written to him about the rash - then they thought it was warfarin. But that information is out of date - warfarin almost certainly was not the cause. So I am seeing him rather unnecessarily really. Not sure what he can do - he hasn't referred me to the anticoagulation clinic - he has asked the GP to do that. And I expect the GP has a contract with one anticoagulation clinic only.

Any mention of self-testing is met by blank stares - and someone asking "What do you mean by self-testing exactly?"

I get my own Coaguchek XS machine from Roche and get prescribed maybe 48 strips a year, and you check that the machine is calibrated correctly periodically. "No we don't support anything like that." What a thing to ask!

I suppose the question for group members is - does any hospital follow the 2013 NICE anticoagulation guidelines when starting warfarin nowadays?

marco-mustard - you must go to your GP and tell him /her that the treatment you are receiving at the coag clinic is unacceptable and could actually be putting you in danger. Your GP has overall responsibility for your health so if your clinic are only treating you as if you have AF and don't understand APS then that is not acceptable. Ask to be referred to the consultant Haematologist in charge of the Clinic and if you get blank stares INSIST because they do have one and they WILL know about APS. If you have to print off the guidelines on this site above for Haematologists and quote that at them then do that. If all that fails tell them you are going to write to your CCG and say that unless they can provide adequate treatment for you then you might be forced to report them to NHS England. Unfortunately we have to do our own research about what is and is not acceptable and then fight for it.

I made a similar fuss about my local clinic by writing to the CEO of the Hospital Trust. 5 letters went by with stupid replies that said nothing. I refused to accept it and said I would go to my MP and then copied my response into my MP. That brought a response which was to invite me to a meeting with the head of the department. Following that they made some changes after the CEO got off his backside and actually went and looked at the clinic for himself and called it "Toxic"!

I was then brought on to a steering committee for the complete redesign of a new department. So you see you do sometimes have to stamp your feet quite hard and be persistent!

Good Luck!

Hi.

I accept that you are anxious and I would be too. However, the clinics are only staffed by nurses, and very few of them have heard of APS. It is relatively new. Most of the patients they see WILL be able to reach a stable INR, but us Hughies are different as our blood is always changing. My consultant said that our blood will always be changing and it is not good to keep testing too often and changing our dose. The body needs to get used to one dose. Also, when you change your dose it can take up to 72 hours to register.

It is all fun and games! You will get used to it! I am glad it helped your symptoms. The same thing happened to me. i stopped feeling like I had early onset Altzheimers!

I feel that we have a responsibility to educate the clinics for the next patient. I have done this for mine. I am fortunate because I self test, but I know of at least one area where the policy is NO self testing. Where are you situated? In an ideal world everyone would follow NICE guidelines but we don't live in an ideal world sadly.

Good luck with it all. Warfarin treatment is a very inexact science, but I personally am very grateful for it. It helps me lead a relatively normal life.

Blessings Ann

I have been on warfarin since 1992 and I was tested every day for a week and then 2 then 7 and depending on my latest result I can be 2 months now. One thing you will have to look at as well is the medicine you take and what foods you eat? A lot of dark leafy veg will affect warfarin and cranberries are a no no, alcohol all sorts of things needed to be looked at. including vitamins etc.

I hope you get it sorted out anything under 5 is not good but not that dangerous unless you are a knife throwers assistant.

Be Well

Going back to the GP will not be possible until July or August - there will be a Locum who will be reluctant to "interfere". And when the GP does get back, he as I say, will probably not refer me anywhere else for contractual reasons. However the Clinical Commissioning Group is a possibilty. They have an incentive to get value for money.

Then there is PALS - the advocacy service of the hospital. They can be helpful. Or there is this fairly new thing - Local Authority run - Healthwatch. I believe they are intended to be the replacement for Community Health Councils which were sadly abolished.

I have written a letter to the Clinic (it is not I think consultant run) questioning my dosage, and pointing out the NICE guidelines. The fact that this letter has not been responded to - nor does a copy appear in my notes leads me to suspect that attitudes may be hardening. "Complain and there will be come-back" should be the motto of this hospital. And I have had years of experience with NHS complaints-avoidance tactics, which are manifold and mature. I would be contacting my MP sooner rather than later.

Thanks for all your help. London Lass - oh I see. You are maintaining that APS patients - unlike others on warfarin - should be kept on a consistent dose and not measured often? So the NICE guidelines should not apply to us? In that case the clinic is doing the right thing. (I do know about Hospital workings - but very little about APS. Not read the books - starting with Sticky Blood - yet!)

For these two weeks - my dosage is 5Mg daily. Last instructions (for a week) was 6Mg except Mondays, Wednesdays and Fridays when it was 5Mg. I questioned this - saying my INR level would depend partly on which day of the week the measurement had been taken.

Interesting off-cut. "anything under 5 is not good but not that dangerous" Yeah, I think 0.4 away from target - and it is going in the right direction is not anything to get too worried about now - but the road to where we are now, is not one that should have been chosen at the outset.

No doubt the Clinic will say we are doing the best we can with the resources we have. Meaning that those resources are far too little for the several thousand patients they have and 25 new cases a week. I suspect there is a lot of hope that the novel anticoagulants will prove to be a good replacement for warfarin in most cases. So improvement of the existing service comes way below shrinking the workload needed per patient as a priority.

I've also been on Warfarin for about 12 weeks (with target of 2-3) and at the start, I was tested twice a week for about six weeks then once a week with unstable inr's . Finally, I stayed the target range then was tested two weeks later and last time was told to come back in three weeks. That's 1 week from this Tuesday. I was told I will eventually going in every month. It is scary to wait longer than I'm used to but I feel that I have to trust them. I am in the US and don't know anyone who does self testing but after having a stroke in March, I do worry.

I wish you the best. Keep looking until you find someone who is monitoring you to the point where you feel comfortable. My neurologist starting monitoring me after stroke then my GP (who know nothing about APS-zero) and then I found an Coagulation Clinic who will only see me until April when I'm going to another GP who is private. It's a hard journey but people here have helped me tremendously. I wish you well.

I am not medical, and we are all different, so I am not advocating a consistent dose. I am just quoting my consultant.

Alternate days is to balance the dose out over a week, as some people cannot get 0.5mg tablets. Don't think it makes a lot of difference which day you are tested.

I think reading the books would help you.

As I repeat, this is a very inexact science. Yes, I think we do need to subscribe to NICE, but as I said we don't live in an ideal world.

Hoping you can sort it all soon.

Loretta, sounds like you have got it just right. Well done to your team

As I said in my talk, praise when they get it right!

Blessings Ann

Loretta, in my experience if you are stable, 3 weeks to a month is fine, Good to be free of testing and get on with life

But this is a personal opinion based on my own experience, and what my group have told me over the years.

Blessings Ann

Yes, on warfarin, plaquenil (400 mg/day) and lipitor--stated on 80 mg of lipitor out of hosp then reduced to 10 mg (leg pains at higher doses) Now until I see my cardiologist in a week taking 5 mg. Don't have high cholesterol but am told that the lipitor provides extra protection for the heart.

Correction - I read that the Clinic use DAWN software - not INRStar as used elsewhere in the Trusts hospitals.

Hi, yes you need to be monitored more frequently especially if inr is unstable, mine has been all month, I've been 2.4 1st wk, then 2.8 next last wk was 4.2! They have checked mine every wk, have another one on Thursday.

My GPS & nurses are very good & will often leave it to me when come in as they have realised we understand our symptoms of when it's high or low..... Was a struggle at 1st so keep persisting,don't give up.

I have my own machine I bought myself & I have the strips on nhs...that too was a struggle! But you have to persevere if you need anything I've learned!

Good luck, Sue