My question is rather complex:

[Lhrlovesmar]

Should patients with Antiphospholipid Syndrome (such as I) be treated and dosed the same way as those persons without APS, but just have had a clot?

[Lhrlovesmar]

The problem that I see is with the computer software (that does not exist) for APS! I sit there in the nurses office, after my finger has been stuck, waiting to be dosed with the same computer software that is used for anyone one that has had a DVT or PE. I know my body so I interact with the nurses to determind to get my dosage. Sometimes the nurse says to me, (after the computer has "spit" out the next weeks dosage), "does that sound alright"? Sometimes it does and sometimes it doesn't! Example: let's say my INR (after finger stick) is 5.7 (like today) and the computer "spits" out (note: I'm on the 3mg. tablet of Coumadin) 7.5, 6.0, 7.5, 6.0, 7.5, 6.0, 6.0 46.5 I say to the nurse, "why not switch that last 6.0 with tonight's 7.5"? We have to interact with our healthcare. I'm certain that we're being dosed with the same computer software as those without APS.

[uniqueflo in reply to Lhrlovesmar]

hello,i also basically tell the nurse what dosage i think would be ok!i see consultant haematologist every 3mths,and she has been so informative.iv been taking warfarin 6yrs+,after 1 1/2 yrs on heparin injections daily.its only last year it was explained that it is nearly impossible to get APS patients stable on warfarin.And that the prick finger tests we have at the drs/nurse can vary greatly from a reading taken from a vein.the computer isn't set up for APS patients,as you mentioned.i take anything from 8mg-10mg daily to get INR range 3.5-4.5.we are all on a learning curve it seems with our treatment.i find with myself that when the consistency of my blood is thick-i have a high reading,and when it gushes out it is a low reading!!??just weird!??

[Herb in reply to Lhrlovesmar]

You are right, its complicated or complex.

That computer software is not designed for people with APS it is designed for people with straightforward clots or atrial fibrillation who have INR range of 2-3.

Also when the patient has an INR higher than 4 and/or APS the machine which does finger pricks may not give accurate readings.

Right now I am on both weekly fingerprick tests and comparing the results with venous samples on the same hospital visit and the results are different every time, sometimes significantly so. I'm not sure what the outcome is going to be , if I am going to have to go back to venous samples only. Some time ago my rheumatologist advised venous samples only but I am really suffering with it.

I see a clinic pharmacist for the dose and he does ask me what I think about the dose he suggests. Sometimes I suggest a slight change.

[MaryF Administrator]

Hi there I agree with the answer given to you already, best wishes to you. MaryF

[daisyd]

I sometimes feel I know what dose I should have with the result given from my INR, head not very clear this am about your Warfarin results, we have to rely on the professionals, but I do think you can question their treatment if you feel it's not right just ask them to explain and perhaps they can get in touch with the Haematology department for if needed extra advice on your treatment

[Manofmendip]

Hi Lhrlovesmar.

I agree with my colleagues but I would say this, also, alternating 7.5 & 6.0mg seems a large variation of dose, and that in itself may cause INR instability. When I was on Warfarin I used to try to adjust my dose, if necessary, by no more that 0.5 or 1.0mg at a time.

Also, I needed my INR to be around 4.0 before I felt reasonably symptom free.

Best regards.

Dave

[Zezes-nan]

Hi Lhrlovesmar

I have the same problem my inr is tested weekly and my GP had a letter at the beginning of the year saying they were stopping the tests as I'd been on warfarin for 6 months and should be stopping as is the norm after a PE. My GP got onto to the team straight away and told them I had APS and they had to continue monitoring me, my haematologist had to write to them stressing I'm on lifetime warfarin. When I go I do feel that its a case of fit into the range as she has to juggle my dosage not go by what the computer says. At the moment I'm alternating between 6 and 7mg as they are adjusting the balance due to me slowing reducing other meds. Oh the joys of APS

Best wishes

[Lure2]

If I was not selftesting it would be impossible for me to be on warfarin. I cheque every second day. Labtest every second month. I only change my K-vit vegetables depending on my actual INR. I am on 5 mg warfarin per day just now, I eat different amounts of Broccoli or Brusselsprouts depending on my actural INR. I manage.

Best wishes from Stockholm and Kerstin

[Lure2]

Hi again,

I agree with what Dave is saying.

Also constanty in what you put in your mouth. Make notes. Lab vein-test more often or buy a selftesting machine then you can feel safe on warfarin with APS.

If you have a high INR I have learnt that your blood is thin. If you have a low INR the blood is thick (more sludgy).

Kerstin