Went to see my rheumatologist today. He says that he wants me to stay on Warfarin as, although a clot can not be seen on a scan, when I am off warfarin or my INR goes below 2 then my speech & colour vision goes. He suggests trying a lower INR of 3. So I am taking the lowest dose that is therapeutic.
I am so relieved.
He also wants me to self test.
Can I ask which self testing machine you use? He said to ask my Dr if they can order it at the GP rate and then me pay them. Has anyone else done this? My GP mentioned self testing ages ago and said she would approve all this and can get the testing sticks on prescription for me so at least that hurdle is already dealt with.
An update on the blood and protein in my water. Had a cystoscopy last week - bladder is fine. Having a CT scan on my kidney next week. They say it is not the warfarin as I have had it on warfarin and off. They also reckon it is not part of the APS. The consultant said they may never find the cause but a scan will rule things out if nothing else.
Thanks for reading.
Lynn.
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stillwaiting
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I have had the Roche coagucheck for 5 yrs and it is very simple to use. My surgery also use one but it is not the same as the individual use one which is smaller lighter and easy to carry around. I bought mine direct from Roche. Will be interested to hear if you can get it through your GP. My surgery has just stopped prescribing the strips which is a pain but I pay up rather than have to go the clinic. You will also need a needle disposal bin - your local council will help you with that.
I also had blood in the urine and cystoscopies, which found nothing and kidney scans which were normal too. My urologist thought it was the Warfarin causing the bleeds.
I used to have a target INR of 4.0 and if mine dropped below 3.3 I was very unwell and used to inject Fragmin until my INR came back up with the Warfarin. I'm now on Fragmin and off Warfarin and would never go back.
I'm so glad your consultant is on your side regarding self monitoring, as my husband had all sorts of arguments to be allowed.
Anyway, he now uses CoaguChek. Its really easy.
One thing though, you do need a fair amount of blood, so a biggish blob is needed! We wasted I don't know how many 'slips' before we realised what the problem was. Good luck
I've been self testing with a Roche CoAgucheck for about 6 years now and it's terrific saving of time and gives me peace of mind and security re my INR. Very easy to use, have had a few glitches but Roche's backup and support (at present, not in the past) has been very good. Good luck and enjoy the control!
Lynn - please contact me at the charity: kate.hindle@hughes-syndrome.org as we operate a three month loan scheme for Coaguchek XS machines and one has just come back into the fold ...
Yes, we have a waiting list. To be honest, most people either ring or email the charity directly when they have any questions about starting self testing that aren't answered by the website. There is a £50 deposit to make sure the monitor doesn't wander off and people can keep them for three months, possibly four, depending on whether they are positive for the lupus anticoagulant. This sub group tends to have priority as all self testing machines potentially have difficulty monitoring INR when the LA is involved.
Great - and this forum being an information point of contact for the public and links to the charity and vice versa, it is good to have that clear information out here. MaryF
I have have been thinking about getting a self testing machine. I have been going every week and sometimes twice a week to my GP as they are unable to stabilize my INR which should be between 3.00/3.5 but very rarely is and never stays in range for more than a week. I also had an ultrasound done on my kidneys yesterday as blood and protein were found at my last rheumatologist visit although was clear at the kidney specialist visit. It will be interesting to what the results are.
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Self testing with lupus anticoagulant 
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