Hi all. Lost passwords etc so not been on here. I'm still on weekly vein draws. 3 years now. Found a different gp in my practice who has dine the free gp training course and is happy to read kays book on sticky blood and work with me on dosing.. he's agreed to prescribe strips if I buy a coagucheck as lots of people use them . I need advice as to how long I run the vein testing in conjunction with finger prick and how often g.p needs to do vein checks once we find out how far the differential is. My consultant wasn't too helpful. I've left a message for her yet again. Coagucheck had no idea. My other rheumatologist had no clue either. Advice very welcome
Buying a coagucheck: Hi all. Lost... - Hughes Syndrome -...
Hughes Syndrome - APS Support
Hi - I use the coagucheck meter and test weekly and initially would then have a hospital vein check every month to cross reference one against the other. Would then self test the same morning before going down for the vein test to get a comparison read across. As I settled into the routine the variance between both has remained about 0.1 / 0.2 and we then agreed with GP and hospital to move the comparison to every two months and for the last 18 months this has been extended to once every three months. This works for us with the caveat that I have an open door with the GP and hospital should my meter readings become erratic. Couple of tips, firstly watch your diet particularly for foods that can impact on your INR and only test once a week. If required I do vary my dosage as necessary to maintain the right level (3.0 to 4.0) but I do it only by a small increments up or down e.g. 0.5 mg at a time and avoid over testing as I find any adjustment takes three to four days to work its way through. Trust this helps
I have had my test machine for years. Very happy with using it. My clinic also have the machine although slightly larger as does my GP. I don't know of any coat tests at all either at the hospital or GP surgery that still uses vein test just for general readings. I think there are a few circumstances they might but not for routine testing. The machine has always been excellent and it is comforting to know the hospital uses it and is the same make.
Hope that helps
It's me. I can't work tech stuff out so I'm replying to my own post. My consultant won't refer me to heamy cos it's t0 odd miles away and she says it's impractical to do side by side testing weekly at that distance. I don't mind driving while side by side testing done. She won't discuss it until June next year my next appointment. Meanwhile my local rheumatologist in middlesbrough asked my GP to refer. He's flatly refused. See previous posts. Thinks unnecessary. So... I'm not shelling out hundreds for a machine until side by side testing is done. I fear I may be L.A. positive which wuld explain my up and down inr values bit told twive now i cant be tesyed for la as im on warfarin. So... please bear with me. Could my GP surgery not do vein and fingerprick at surgery for say 4 x times so see how far out values are with a coagucheck? Before I invest. Why oh why is everything a battle ... thanks for all your support
Do you have a Specialist for your APS? Did they not test your LA before starting Warfarin? If so what did that bloodtest show? Are the Cardiolipin and Beta2Glycoprotein1 - antibodies both positive?
Who is in charge of your testing with the CoaguChek XS? What therapeutic level are you put on and what INR do you usually have?
A lot of questions I know.
Good morni g kersten. Have a local rheumatologist not too familiar with APS. And a listed consultant (apsuk website). I had had 5 clots and plagued my go since 1997. Why am I clotting. Finally after a hysterectomy in 2014 the GP dismissed my concerns that I had a clot and within house I was in an ambulance.. yet another p.e and put in warfarin for life at the time. A consultant urologist put me on this. Therefore L.A. never tested
Since then I have needed weekly testing . My target is 3 to 4 now . I take 6mg and 6.5 on varying days and g.p happy I make those dosing decisions myself as I've levelled out somewhat since I did it myself. No one is guiding me regarding coagucheck. I'm guiding my gp
I wish you could see a Specialist as I see you live in England.
A target INR of 3.0 may be too low. Some of us, who have been on Warfarin and selftested for a long time, have learnt that we need to be over at least 3.5 to be without symptoms.
Only test once a week is not often to be able to follow your INR at home by yourself. I also do that but I have to test every second day (fingertest) as I want my INR to be stable not to have more clots or symtoms than necessary.
It is also important to know your vein-value as that is the bloodtest that counts as reliable. It can be a great difference between the fingerprick-test and the vein-test. It is very important to do both tests within 4 hours time to find out if there is a big difference between the two. Also do it several times to make sure that the difference is the same.
Do you use greens to change your INR?
Hi Kerstin. Sorry I spelled your name incorrectly previously..i do indeed see a specialist. One listed on apsuk website..inr 3 to 4 target. I feel awful 7nder 3 and have told her. She also advised i inject myself if i drop to 2!!!!!!!. I have asked her to review this. She wont discuss it until my next appointment in june 2019
That APS-Doctor does not know what APS is when you should inject under an INR of 2!!
I should inject myself under an INR of 3.5.
She is in charge of your anticoagulation and you should not have to wait antil June as You are not properly anticoagulated!
Is it true that you are dosing yourself guiding your GP about the CoaguChek. One Doctor must be responsible for your blood and your testing and if something happens to you because of your too sticky blood.
I know Kerstin.. .she's a recommended consultant at the freeman hospital Newcastle. I have some fragmin or something similar. I'll deal with it myself as I do not know where to turn anymore. I was diagnosed in 2014.. I go round in circles. Are there any reference papers I could take to her or my G.p. that might help. Once more you have confirmed my feelings on this site situation
Thanks for the 4 hour tip.... im going to ask gp if they will do side by side vein and fingerprick at my weekly appointment PRIOR to shelling out hundreds in machine. To gauge the variation. It's No good waiting until June when she clearly isn't keen on me going ahead or perhaps not too interested. My daughter was with me at last appointment when I was trying to take a positive stance with coagucheck. Daughter appalled... thanks for your comments so much. Really feel so alone with it all
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