Hi Everyone - do many of you self test and regulate? How do I get approved for self testing? My INR and dosage has been consistent for over 6 months. I am moving to a place that is not convenient for my monthly testing by my vein so I was hoping to self test. Thoughts? Suggestions?
Thanks, Wendy
Can you contact Kate Hindle at the charity she will have up to date advice for you. MaryF
I contacted Kate who just referred me to the website 
Ok well hopefully the information on the website will guide your inquiry, actually I don't test at all being only on Aspirin currently, although I may be about to change regarding that, however others on here do, and I am sure will give feedback. MaryF
As i live in Stockholm I do not know how you get it in England.
My Hematologist and also Roche approved to it 4 years ago and i think they thought I was so "unusual" so I had it for free. Perhaps I am a sort of "testperson" with all my antibodies in high titres all the time.
Nowadays people who take Warfarin (all people not only APS-people) have it for free around the Stockholm-area.
I also learnt yesterday as i talked to a person at Roche here in Sweden (a Specialist of the machine), that when you stick the needle in your finger (using the machine) if you wait LONGER than 5 seconds before the blood is on the test-strip, your blood will coagulate and you will get a lower number and it is not quite reliable. Not so much though but if you wait a very long time the blood will continue to coagulate.
I had not heard someone mention it and had not thought of it either but I thought i should tell it here for your info.
Kerstin
I discussed it with my GP giving me reasons. I paid for the machine and I had her approval for the test strips on script (they are expensive). Machine costs around £350- £399 these days and is obtainable from Roche direct.
Take note though that if you are lupus antiocoagulant positive it may not work for you. I am LA+ and it does work for me though. I get a venous cross check done at my surgery every new batch of strips.
As well as info here see anticoagulationeurope.org/a...
If memory serves there was a talk at patients day from a lady from ACE Here's a link healthunlocked.com/hughes-s...
Self-testing can be a tremendous benefit- but it doesn't suit everyone.
Best of luck
Tim
The cost is the bugbear. £300 for the machine, then the testing strips on prescription (I have to pay for scripts). How many strips do you get each time, can anyone tell me? I spoke to my doctor about testing and have approval, but I'm worried about forking out for a machine only to find it doesn't work for me (I'm LA positive). There should be a try before you buy!
If you are getting more than 12 items of medication per year then you should be prepaying. Currently £104 per year or £28.40 for 4 months. This will cover you for all prescription items prescribed by your Gp dentist or NHS prescriber in the period regardless of the condition being treated.
Details are in the info on the back of your repeat order slip from GP or go to ppa.org.uk/prepayment.
Hi Minnime63,
APS is very rare and Lupus Anticoaglant is also very very rare and Roche know that LA is a "no" for selftesting.
I have a CoaguChek XS-machine since 4 years and I have all the antibodies and also Lupus Anticoagulant all in high titres every time. I have doubletested in the vein with the hospitallab for a couple of years and the difference is the same between the machine and the vein-test at the lab every time. There is a difference but the same and that is OK!
I have heard (from a specialist for the machine at Roche here in Stockholm) that it is ok of you have a therapeutic range between 3.0 and 3.5 in INR (it was around those figures) with a difference up to 1.0 ( between the machine-value and the véin-test drawn at the hospital).
I have always a higher number on the machine and a lower on the vein test at the lab (taken within 2 hours). It is also important that you do not wait too long after you have blood on your finger till you put it down on the strip. If you wait more than 5 seconds the value can differ and the blood can start to coagulate. Just a little difference though.
Of course you shall have a talk with your Specialist about this before you buy the machine on your own expence!! It must be possible to try and see!!
You must try it. It is so much easier and I trust my machine up to 100 %. We are all different though and because I have very high antibodies and also LA my blood is perhaps more erratic. I do not know, I can guess only.
Good luck from Kerstin in Stockholm
Hi, I have been self testing now for just over 5 years and as long as you don't get complacent it's fine. I bought myself a Coaguchek tester direct from Roche and it couldn't have been easier. Obviously at first I was ver wary of if the numbers were correct, so I did a few tests at my local surgery and all was fine.
I get my needles and strips from my doctors and thankfully all is good.
I suggest you give it a go, good luck
Steve
We live in the US. My husband was prescribed CoaguChek after his second stroke in 2013. We check his blood weekly (or more if INR is too low) and regulate ourselves but still call it in so Dr. has up to date record of what he is taking. It runs about .3 higher for him than vein draw.
Been self testing for seven years in conjunction with my warfarin clinic who tell me what dosage to take when I ring in with my results. Wouldn't feel confident to self manage.
My bugbear is that my CCG will only prescribe 12 strips per year. It is unfair when other CCGs will prescribe as I test most weeks so it is seriously expensive but I pay up so as to have control.
Hi Wendy,
The best person to contact is your consultant. I unfortunately, am not allowed to self test because my consultant stated it was not accurate for me and would be quite dangerous. But bear in mind they cant regulate my INRs so I have to be tested atleast once a week.
Your Rheumy is the best person though your GP may help. Apparently we have to buy the machine and youll need a doc. to tell you the best makes to get. Then hopefully the NHS will foot the bill for the bits that go in the machine as these can be very costly.
Best of Luck
Regards Diane
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