I have just received confirmation that my GP will provide strips on prescription, after fighting for a couple of years, following my GP practice changing their guidelines and refusing to give them to me, after prescribing them to me for 10 + years.
There are some restrictions, if I need more than 2 pots of 24 strips over 12 months, I will need to see the GP and justify why I am running short. Result
Hi, I feel so sorry for you that you can not decide if you want to take a cheque more than once a week.
I cheque every second day. I have Lupus Anticoagulant and my INR is all over the place if I am not careful enough. Can you not try to convice him that you need to do it more often to feel safe on warfarin?
Best wishes from Kerstin in Stockholm
Hi Jan
Who is managing your APS, as they should tell you GP how frequently they want you to test you INR?
Like Kerstin, I used to have to test either daily or every other day.
Best regards.
Dave
Lucky you! Mine won't budge. All I am allowed is 12 per year. It is very frustrating, but I pay up as I couldn't face going to the clinic. At the moment I test weekly, but when I am stable do it fortnightly unless I feel unwell.
You have 48 teststrips per year. That is about almost one test a week. That is not enough.
I do not understand. Are you only allowed 12 strips per year? Do you also test every week at the lab in the vein? My English is not well enough to understand what you mean. You are doing both?
Kerstin
I am given 12 test strips by my clinic as my annual allowance. If I want more, which I do, I have to buy them myself so I can test myself at home each week. Sometimes I have to test twice a week, but not very often.
So you do not go to the lab for a veintest every week or every second week then?
If you do not go to the lab for tests like i described above, is it enough to test with the machine at home only once a week with the test strips? Do you have an INR that is so easy to maintain at the right INR? Good for you
In Sweden we do it at least twice a week when we have APS. As I have Lupus Anticoagulant I think it is perhaps a bit more problematic for me. I do it every second day. But we have the strips for free and my Hematologist understand that I have to do it so often to have a stable INR which is very important. I go to the lab at the hospital very seldom nowadays. They know me and trust me.
I have self tested for 6 yrs with no problems and my inr remains stable for long periods at a time. If it is not then I may need to test more often than weekly, but this does not happen very often. By the nature of Hughes everyone is managed individually. Since I was discharged from St Thomas I am not under the care of a consultant but am well cared for at my local warfarin clinic.
Good that you manage on so few strips and that your INR is so stable. Many people on warfarin have trouble to keep their INR stable with this illness.That is why it is much better to selftest.
I am sorry I mixed you up with Jan as you answered and also had problems with strips. That was why I could not understand your different numbers etc.
Kerstin
I have only recently been given a script for the test strips. They save rhe NHS money and at the moment I am testing at a clinic and on my machine whilst I try to see if it works for me.
I have not been told if it is limited or not but if so I'll just have to keep up the pressure. Ive been on warfarin since last November and its yet to stabilise as I've had various infections etc in that time.
Keeping my fingers crossed! Asked the nurse today if she thought there would be any change but she has said not for the moment.
Hi, I mixed you up with Panda. She answered and was also short of strips. So sorry. Hope you get the strips you need to have a s table INR.
Kerstin
This makes me very cross. I self-test at least every other day. My INR target, set by Prof Hughes himself (and that I suspect helps along with the test period recommendation) is a narrow 3.8 to 4.0 but there are times when it can be all over the place. So much so that if it drops below 3.0 I have Fragmin to inject whilst I regain my target. I have also had multiple TIAs with an INR of 3.3. Thankfully my GPs now fully support my self-testing, and where they once doubted the value of the Coaguchek machine, they now use such a machine for most INR testing of the many patients on warfarin.
As well as making making me comfortable managing my own INR, the ability to self-test has eased their concerns enourmously when it comes to the medicines that I take that can affect my INR. I take at least 17 different meds a day, in a quite complex and not always routine fashion- and any deviation caused by the medicines, or anythging else, I am quickly on to and resolving. Like many others, I have a lot of things going on with my body and knowing what my INR is has saved me being hospitalised on a good few occasions. I now also manage my own coagulation prior to invasive examinations and operations, whereas in the past I have spent a week or more in a hospital supposedly being managed-(they seldom get it right).
Let us not let the GPs forget that an accurate INR, for people with Hughes, is not the casual concern that it is for most patients for whom it is just precautionary . For us it is a life saver, and a very cheap one too.
Bottom line - the cost of my strips probably pails into insignificance compared with what the alternative might be. And my GP's, and my numerous hospital consultants, have the added benefit of crucial information at their fingertips for many of the consultation that I have.
I don't doubt for one second that I am the only person here who gets the same benefits. Feel free to quote me- and good luck.
Thank you for that answer! I do agree with you. In everything! It is a life saver.
I can not understand why Sweden understands this and not Britain and has a system that works. Patients and doctors and nurses work together in best cases. Machines and test strips are free. Around the Stockholm area at least.
I am afraid though when I will be hospitalised. As long as i can talk and think i can teach them perhaps but .......
Best to you from Kerstin
Thank you for all your replies, it has taken several years to just get them to agree to the principle of supplying the strips on prescription. It appears the restriction of only 48 strips per year is purely down to cost to the GP. But they have said if I need more they will look at the reason and if I have the support of my consultant.
At the moment I am testing weekly as my INR has fluctuated between 4.1 and 4.9 over the last month, I feel great at this level but my haematologist wants it to reduce to within my 'therapeutic range' of 2.5 to 3.5
When my level is below 3.0 I find it difficult to get a large enough drop of blood and therefore a valid reading and I need to use a second strip. At its worst I once used 5 strips to get a valid reading, which turned out to be 1.8
By keeping accurate records and with the support of my haematologist I will be able to justify the number of strips I need.
Great news, well done. MaryF
I was worried about getting the strips prescribed but thankfully I got them as I ordered my machine. First two readings on the machine differed from the clinic result but last one matched exactly. Hope the £300 for the machine will be justified and abit worried because I know they dont always wirk for APS, but weekly hospital appointments were really depressing me.
Been self-testing since Nov 2014. My medical plan allows 52 strips a year. That is for once a week self testing. I don't pay anything for them. Sometimes I go through more than one on a test because I don't draw enough blood. Last week it took 5 strips. When I call in the results to the company, who in turn faxes them to my doctor, they ask if I need supplies. They send 12 strips and 16 lancets when I tell them I am down to 4 strips. I was told that if I go over the allotted amount to either go to my doctor for the rest of the year for testing or I would have to pay $35 each strip. Then again, they said my doctor may be able to get me more strips.
What argument did you use to get the strips our doctor is refusing to supply them on the grounds of cost! We were also told by his stroke consultant that there was
no need to see rheumatologist as he saw one in 2007! Surely things have changed since then?
Could anyone advise us on how and what rights we have to request to have hubby's APS looked at again?
Yours hopefully vespa1
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