Hi, my therapeutic range has been set at 2 - 3. I asked my heamatologist if we could aim for the 3 end and she said yes. The nurse checked with her and she confirmed that was ok. It's taken from diagnosis of very high triple positive APS in November to get into that range with 10mg of Warfarin a day (the same dose for 3 weeks). The problem is nothing has been changed on the system so every week i have to wait for the result so I can talk to them face to face to remind them we are aiming for 3. But they are happy even if it's at 2 and so should I be (let's all applaud...let's not) I am seeing the heamatologist at the end of the month and would appreciate any advice anyone has on getting them to agree to increasing it to 3-4. I don't think I will be able to relax until it's at a higher range and I don't want to buckle when they try and convince me 2-3 is sufficient. I've watched the Video where Prof Hughes says it should be around 4 but I can't see them agreeing to watch the video, so any ideas on something's i can print off to take with me would be really appreciated. Many thanks and have a good weekend.
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Here is the paper for you, it is a very good one to give medical staff: the-rheumatologist.org/arti... and no harm in sending the paper and any video to your doctor in advance of your appointment, if you ring their secretary, you can send to them, marked for the GP's and Haematologist's attention, it may well help you. MaryF
As you are triplepositive with high titres (hope I got that right?) you should have a Specialist of autoimmun illnesses and I doubt that your Hematologist is knowledable as they are glad if you have an INR of 2.
Sometimes we have to change our Doctor but do as Wittycjt said and show them the paper. Good suggestion!
Hi Lure2, you are correct regarding the triplepositive with high titres. I was sent to see a Heamatologist after a DVT they then did the tests. The 2nd set came back with the same results. I did also ask what other blood tests were carried out but I don't think it went down very well and I have to wait till my appt at the end of March for a list. This is why I'm anticipating a similar response when I ask for the INR range to be increased. Thank you for your support.
I feel for you, this is something that many of us have experienced and to be quite honest when you’re feeling so ill you really do not feel like taking on such an immense fight.
I actually printed off a body outline and put it on the side in the kitchen and every time I experienced another type of symptom I added that to my body map. It was quite congested as I began to finish it. So sit down and think about every symptom from little aches, shooting pains, headaches, sleepless nights, mood swings, depression, and so on.
I also kept A diary of how I felt against my INR this showed conclusively I needed to be at a higher end.
My levels are up-and-down so much that I never have a chance to be within therapeutic range for any length of time. I actually plotted a graph of my results over a year and it definitely showed that I resemble a mountain range.
I actually prepared it and sent a copy in an A4 envelope to my GP, my rheumatologist and my haematologist. That way each of them were able to read through them in advance
As we only have such a short amount of time with any medical appointments these days, it may be beneficial to send them in advance of your appointment I definitely also take a copy with you to hand them on the day and take your copy that you will keep safe, with you.
Basically what I am saying is the way I see it, we have to prove conclusively that we need to have a higher range so that they are confident in raising it. Remember what Professor Hughes said, “this is a clotting disease not a bleeding disease. If only they would delay their fears of our bleeding and treat the symptoms many of APS patients would feel much better.”
By the way my range is now 3.5 to 4.5 aiming at four - when it goes under three I must take Clexane injections until it is over three again. when at 4 my symptoms are copable, when under four I struggle with life.
I wish you lots of luck hope you get on well with your homework ha ha and your appointment. 10mg does seem a lot of warfarin to take but I am on 19 mg routeinely - with the dosage it doesn’t really matter so long as the end result means you are within your range. 💋
Are you being looked after by APS specialist team at London is Beverley hunt? You need to see a specialist haematologist in APS rather than a local haematologist.
I have fought for a target of 3 to 4 after reporting on rivaroxaban and apixaban and having 2 strokes.
The local haematologist said 2 to 3 was adequate but the APS expert prof hunt Who she referred me to said I had neural APS ( as ive had stroke and chorea (abnormal movements)
So she changed it fron3 to 4.
But....I am muxh more well when my INR is nearer 4 I have less movements and less brain fog. Etc.
However they Are happy if it's 3.0....we nope. I'm not as if it drops below 3 I have to clexane 40mcg as like you in triple positive and super high risk. I had 3 PE s last year on anticoag s And I never ever want one again.
Last week I was 3.0 and they never even rang me to tell me to increase me dose.as a far as they were concerned I was in range and they do not understand APS. Our daily fear is not haemorrhage it's clotting!!!!!
Bev hunt wants me to control my own warfarin level but they are very reluctant and won't let me
Its sooooo frustrating.
I'm seeing veg hunt this week so gonna discuss it with her.
So in say to you
1. Nake sure you.are seeing an APS specialist haemotologist.like the team at st Thomas's in London. Your local haematologist can refer you
2. Have you reclotted on anticoag?
3. Do you have evidence of neural APS? E.g. white lesions on mri scan just of stroke etc.
If so your target shoukd be 3 to 4
This is clear guidance under BMJ best practice guidelines for APS you can access online.. I can enail to you if you cant find them
They state 2.5 but is satisfactory for most patients but neural patients or those whinhave reclotted must be on higher INR above 3.
Not good hun...insist it's noted on file. My lungs are now permanently damaged due to my in dropping all the time and them saying it'll be ok. IT ISN'T OK make them listen hun x
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INRS up and down, weekly tests since April!
Waking up with joints hurting?
Dragging myself up!! AGAIN!!!!
Up to date with APS/THYROID/LUMPS on the hand etc 
Feeling so weird even in INR range.
