Self testing with lupus anticoagulant

[Lind8]

Hi does anybody successfully self test with all APS. My haematologist said as all 3 tests are always positive that it would not be accurate enough. It would make my life so much easier if I could self test, so I just wondered if anyone else is self testing and how they have got on. thanks

[amy1808]

Hi I have been self testing about 9 months and it's great , do it every other day and when to hi eat broccoli and to low adjust warfarin . Get strip and needles on prescription from dr and have had no negative feed back at all . I am in control . INR dropped today to 3 and I feel lousy so only one thing for it , wine 🍷 😂Xx

[Lind8]

Hi it is because of LA that hospital said it wouldnt work. But as some people seem to have had success I would at least like to try it. Been on high dose warfarin for about 30years with foundaparinux injection if inr below 2.5. Have weekly sometimes daily inrs as never been stable & TIAs if below 2.5, it makes going on holiday etc difficult. As heamotologist was against it I'm worried Drs will just refuse to let me at try. Il go and see them anyway see what they say. Thank you

[Lind8]

Hi I tried heparin, unfortunately I became allergic to it , hence foundaparinux injections when inr less than 2.5. Have weekly sometimes daily blood taken veinously at Drs and have had for many many years. The hospital won't entertain the very new drugs out as have platlet problem. I can only try & see if Drs will at least do finger prick test while taking my blood and see what the difference is. It would make such a difference to my life and I wouldn't be tied to the Drs. Thanks again

[MaryF Administrator in reply to Lind8]

I hope you get the chance to try out or borrow a machine, with the protocol mentioned above by Lynn. However the testing strips are expensive and often not prescribed. You will not know if it suits you until you have had the chance to try it out, hope things work out for you. MaryF

[Tucson]

I'm LA positive and self test and self manage with great success I just email my Inr and dose to the clinic once a fortnight regardless of how often I test. I have a range of 4-4.5 and manage to keep it in range most of the time which the clinic can't do when they only test once a fortnight. I get enough test strips to test twice a week if I test more frequently I supply my own strips. I pretty much forced the issue after my 3rd stroke in february when the anti coagulation service failed to test me for over a month even though I pleaded with them. So I went ahead and bought my own machine and strips and kept saying I was managing my Inr far better than the clinic were and they finally agreed.

[Lind8]

That sound like it works really well, although you have had to fight to get there, good that they listen to you now.. Do you know if the self test you do with machine is higher or lower than if you had one done with blood drawn? I think the more information I can give the dr the more chance I have of getting him to consider it. i get my blood taken at GP & then sent to hospital, they insist on one veinous test a week and more if INR out. So I would love to be able to self test. The Drs has some advantages, in that the nurse is now one of my best friends but only as I have seen her so often over the years 😁

[Tucson in reply to Lind8]

My vein draw is higher but I had to fight to get the vein draw comparison, in the end my Gp gave me a form for a hospital vein draw and said just photocopy it and do what you think best.

[Ray46]

I am LA+ve and self testing for almost a year now, however there can be accuracy issues with it and there are currently no standards/guidelines for managing it so it is up to your local anticoagulation service.

the issue is that the machines may overread with LA present, and you need to know how much your offset is and if it is stable. I was on comparative tests (blood draw and finger at same time) for two or three months before self testing was allowed, and six monthly review (with comparative vein test) now. If my offset goes wild then I'll be on blood draws only at the clinic, forever (or until easier to manage drugs are approved). But, aa I said, there are no standards on this, my doctors seem quite clued up on it, but they are still making it up as they go along (officially its called a research program, same thing...).

it can be done, but you'll have to work out a plan with your Drs.

[Lure2]

I am triple-positive and have selftested for 5 years. I have a CoaguChek XS froom Roche and a wonderful backup from my Hematologist and Hospital (a specialsit-nurse who knows me and my values).

I test though every second day to be certain I am in range. if under my INR (3.5 - 4.0) I take a Fragmin-shot till I get back in target. I eat a lot of greens and use the vegs to maintain my iNR in target.

To handle this I have to make a protokol (notes) of INR, date, exercise, new drugs, vein-draws, amount of vegetables. That is crusial if you are going to handle your triple-antibodies.

There is a difference between the vein-draw and the fingerprick-tests. The fingerpricktests with the machine are always higher than the vein-draws at the lab at the hospital. But remember we are all different and you could have a higher vein-draw perhaps. That is what you must find out by doing a lot of double-tests and note your figures and the differences etc.

My Hematologist has always been very understanding as she knows it can be difficult to handle the anticoagulation when being triple-positive with persistingly high titres also.

Good Luck

Kerstin in Stockholm

[Fra22-57]

I would like to self test but normal rheumy said not.I forgot to ask when saw consultant at Guys so will ask again in November. He did say thou that my INR was good and if went below range didn't need heparin or didn't need that if flew more than 6hrs which goes against what everyone on here has told me.I would like to self test as don't get tested for 3 weeks and am on holiday now and have been ill 2days this week which you never know if your INR is high or low when you not eating as normal in England

[Lure2 in reply to Fra22-57]

Hi Fra,

I do not understand why you go to see your other Rheumatologist and ask him questions about your anticoagulation as it should be prof D´Cruz or his team that should answer your questions about selftesting and LMW Heparin when the INR is too low.

Every 3 week sounds very seldom to be able to keep stable. Or....?

Have a nice time on your Holiday! Enjoy ever minute of it!

Kerstin

[Fra22-57 in reply to Lure2]

It was Prof D Cruz who gave the answers.I just forgot to mention self testing but I will when I see him again in November. Thanks Kerstin

[Tofino5]

I love reading about the self-test successes but it was not that way for me. I had to beg for the chance to self test as I am triple positive with high readings. Once I had the machine my hemotologist had me come in weekly for (if I remember) about 6 weeks. They would draw blood while I did the finger stick. Unfortunately the numbers weren't consistently either higher or lower, but they went both ways. So I clearly saw that for me to rely on self testing would be dangerous.

However, you see from the other responses that it works for some people and the only way to know if you would be one of them is to try it. I hope you keep asking, because I think it would be life changing, giving you much freedom and peace of mind.

I had a terrible time trying to have a stable INR for over 10 years. No matter how obsessively I watched food etc, I never did achieve it.

Good luck and keep fighting!

[Saltydogs]

I also am triple positive and self tested for about a year and a half. I got very sick and I believe because my INR was way too low I had issues in my kidneys and generally all over poor health. It was bad enough that the doctor I had knew nothing at all about APS and refused to keep me higher than 2-3 and on top of that, the machine inaccuracy was making it much worse. When I left that terrible doctor, the new doctor I had took a finger prick test in his office but also sent one to the lab, and we found his finger prick machine was also inaccurate so one day we took a reading from his and my machine and sent a blood draw. Both finger prick machines were wrong!! They both measured higher than the blood draw by quite a lot. Now I'm getting a vein draw every week, sometime twice a week. I also have an extremely difficult time keeping my INR level. Like most people who do, I do everything the same and still have great fluctuations. I am so much more myself with my INR between 4 and 4.5....and have been at 5 and feel completely myself! Like everyone has said, we are all different and there is not a right or wrong approach, no one has a one-size fits all body!

[Lure2 in reply to Saltydogs]

Hi Saltydogs,

I wonder how big the difference is between the vein-draw and the machine-draw?

They let you have vein-draws often and that is of course good as you can know the difference. Hope the lab is good and know how to handle your blood-tests.

The difference for me when I have a machine-draw of 5.0 is that the vein-draw is about 4.0 and that is the perfect figure for me to feel well.

Kerstin in Stockholm

[Saltydogs in reply to Lure2]

Hi Kerstin I have been going to a hematology Dr. When I first saw him my INR was at 5. I felt great! Well every time I have a INR test it jumps around. I can't seem to keep it s

Stable even though I don't have change in diet or activity. I fin a lot requested he put me on low molecular heparin

Its a pain but I feel it gives me more control. Had to argue with him t

O keep me at 4-4.5 range. The heparin I think may be the solution? What do you think?

[Lure2 in reply to Saltydogs]

I wonder if the Hematologist is specialized in autoimmun illnesses? If you have an INR of 5.0 on vein-test that is a bit too high.

I wanted to tell you that there is a differece between the vein-draw and the fingerpricktest and if you are going ot selftest you and your Specialist must be aware of the difference.

Has he put you now on LMW Heparin instead of Warfarin? That is very good!

Kerstin

[Saltydogs in reply to Lure2]

Yes I've been on Lovenox for about a month now. He was way more comfortable putting me on that than keeping me 4-4.5. I can't say I'm feeling much better though. I have chronic kidney disease which I was told was due to immune complexes. My C3 and C4 were very low and my rheumatologist said it was due to immune complexes being deposited in kidneys. I also just found out my pth is high and homocystine level is as well. Was diagnosed with osteoporosis as well. Somethings going on but have no answers yet. Having an ultrasound on parathyroid Monday. Dr said it could be caused by kidneys? Just don't know why I feel so exhausted even though all I do is sleep!!

[Lure2 in reply to Saltydogs]

Hi Saltydogs,

It is a tricky illness and we have very thick blood. So we feel fine at a high INR over 4.0. Warfarin perhaps is the best drug for us with both arterial and vein-clots today with this illness.

Are you Lupus Anticoagulant. It is very difficult to keep the INR in the right place without selftesting.

But the most important thing to get better and get the right treatment etc is to find a Specialist of Autoimmun illnesses and i wonder if you have got such a Doctor?!

If not try to find one! For your own safety.

Kerstin in Stockholm

[Lind8]

I can completely sympathise with you over INR being all over the place mine is never stable no matter what I do.. I even take 24mg of warfarin a day & it can still be low. after 30 years of tests my veins are objecting so getting harder to get bloods.. I did try machine when they very first came out many many years ago with blood drawn at same time but their was no consistency to results. Just hoping machines have advanced. It is a worry when you go on holiday with no idea what your blood is doing. Thank you so much for your replies It gives me much more food for thought and also to know that it doesn't work for everyone, plus it's not just me who struggle to maintain my INR. I too feel great when INR running high but feels like Russian roulette with what your INR is doing. But can't complain think I'm one of the lucky ones who's dr is quite happy to do daily INRs if necessary & don't have to fight to get them done and also discusses with me what dose of warfarin I think I should be taking. We should be allowed to be involved in our treatment

[Saltydogs in reply to Lind8]

I just had appt with hemotologist and requested he put me on heparin. low molecular. I don't believe Coumadin works best for me because my INR's jump all the time. Its a pain having to inject 2x's daily but it clearly helps me stay coagulaed thus feel better...this is new for me so I wonder if anyone else has tried it because of their INR jumping around as well...something to think about?

[HollyHeski Administrator in reply to Saltydogs]

I couldnt stabalize my inr and had further clots so was put on clexane injections, alongside aspirin & clopydogrel, that was over 10 years ago - Ive not had a further clotting episode so has suited me well.

[Lind8 in reply to Saltydogs]

Hi I did try heparin injections as INR was never stable. I was only having one injection a day but was still having TIAs. I also went on to develop an allergy to heparin so had to stop taking it. They then tried foundaparinux injections instead but was still getting TIAs and then suffered a stoke. Back on wafarin now and foundaparinux if inr less than 2.5.. we all seem to tolerate blood thining medication so differently so I would try it and see.im sure not having to have constant INR tests would make life a little bit easier for you . Hope it works for you

[Yllek]

I'm LA positive and I self test and self dose my warfarin. There is a difference for me in the readings and it can change but my GP gives me inr blood test forms so I can go for a vein draw whenever I get very high / low readings or if I get symptoms- I don't go to an anticoagulant clinic just the normal blood room.

It's difficult to manage but I'd rather do it this way myself than rely on people who don't Understand the condition.

Good luck to you x