Hi:)! I'm comming from Serbia and I wonder if the INR ranges are same in my country and in UK? I red on this forum that most of people feel much better when their INR level is btw 3 and 4, while when it drops below that level it's hard for them to function, they get pains and aches, etc.
My latest protothrombin time is 13,4 sec - that makes my INR level 1.13. Referent values for INR in my country are 0.90-1.30. According to that it seems that my INR level is normal..? But there is a note that those ref. values (0.90-1.30 ) are when the person is without therapy, but with the therapy ref. values are 2.0-4.0
The only therapy I am currently on ( eversince from March ) is 100mg of Aspirin per day.
Any advice? I'd be gratefull:))!
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Inr levels are really only relevant to those on warfarin. If you are just on aspirin, I think there is no need to worry. Warfarin is generally only given if someone has had a blood clot. Hope this helps.
I'm not sure that aspirin is enough for me since I was previously diagnosed with MS, but when I heard of Hughes syndrom I tested myself on antiphospolipid antibodies and found that I am strong positive on Lupus anticoagulans. According to Dr Hughes it seems that I have a wrong diagnosis, especially because I have had only one "MS" symptom - optic neuritis.
I have started to ask for another oppinion since I have many of symptoms of APS, Sjogren's, and I was also diagnosed with fybromialgia. One of hematologists I have talked to told me that lessions I have on my MRI scan ( even neurologist have told that they are small, rare, discreet and not on typical places for MS ) might have been due to tiny thrombosis. But no one of doctors here is ready to recall previous MS diagnosis, not even to question it.
In March I've had a surgery after which I got a Heparine shot, and for days I felt great, no pains and aches, no swelling, no dry and itchy eyes - but it lasted only several days.
I taught that Heparine therapy would help me to prevent possible thrombosis, but it seems that I have to wait for one to be allowed to use Heparine..
INR is short for International Normalised Ratio (so should be the same in serbian) and is a measure of how long a blood sample takes to clot when compared with the standard of a sample taken from someone who is not on warfarin.
So if your INR is 1.13 then it is taking very slightly longer than average to clot, which could be related to your diet (alcohol and certain foods will raise the INR because they affect clotting times)
or just your blood not being hyper-clotty, which could be a good sign!
Herb, thank you for your answer!! I'm sure that my blood today is not the same as two years ago, since I was realy into awful eating habits, to many sweats, junk food, fried food, processed food, etc. That may be a reason why doctors can't rediagnose me with APS..
Due to the increased tendency to clot, the main aim of treatment is to 'thin' the blood, so that this tendency is reduced. This is usually achieved for most patients, by providing anticoagulant (literally anti-clotting) therapy based on the extent of the clotting.
There are currently three main medications – aspirin, heparin or warfarin. For many thousands of patients, one “junior” aspirin a day (approximately 75-80 mg, or one quarter of a regular aspirin) is all that is required. Its main action is to make the platelets of the blood less "sticky" and is sufficient to hold off clotting. It is the main medication used in pregnancy in Hughes Syndrome patients with previous miscarriage.
For those who have actually had a thrombosis, the choice is between heparin and warfarin. Heparin is a very useful anticoagulant but unfortunately is only available as an injection, and cannot be given long term because of an increased risk of osteoporosis. It is, however, used in some Hughes Syndrome pregnancies, as warfarin is potentially toxic to the developing fetus.
For most people with thrombosis, warfarin is the treatment of choice. Used for many decades warfarin is the 'gold standard' anticoagulant tablet and, provided that the anticoagulation dose is monitored carefully to test that the patients blood is thinning to the correct degree, it is an extremely safe drug. Those taking warfarin are monitored with a standard clotting test called the INR (International Normalized Ratio) - a procedure carried out either in GP's or hospital anticoagulant clinics, or, increasingly, by the patient themselves with self-testing INR machines.
For other symptoms, most patients are treated on a case-by-case basis, or ailment-by-ailment basis. Plaquenil is an effective treatment option for general symptoms such as rash, fatigue and pain.
Notes on the main three treatments
Aspirin
Low dose aspirin (‘junior aspirin’, ‘baby aspirin’) – at a dose of between 75mg to 100mg a day is known to be an effective anti-clotting agent, making the blood platelets less sticky.
Safe. Side effects are rare (indigestion; allergy especially in asthmatics)
Not sufficient treatment of those with major thrombosis or stroke
Heparin
Newer “low molecular weight” heparin (such as ‘Clexane’ or ‘Fragmin’) has replaced older preparations
Only available as injection
Useful as a ‘first line’ (immediate action) treatment in thrombosis, prior to warfarin use
Warfarin (Coumadin)
Despite being dismissed as ‘rat poison’ by some journalists, warfarin is an extremely safe and effective medicine. It has a good long track record having been around since 1950s
Side effects are rare – the only vital issue is to keep the dosage correct
The thinning of the blood achieved by warfarin is measured on an scale called ‘INR’ (International Normalized Ratio): normal’ is “1”; half thick blood is “2” and one third blood is “3” (think of it as ‘full cream’, half cream’, ‘skimmed milk’)
For most patients who have suffered a thrombosis, an INR of 2 is used. However, many patients with Hughes Syndrome – especially those with headaches require more intense blood thinning so an INR of 3 or more is maintained. For more information about living with anticoagulants, please visit Anticoagulation Europe.
Clopidogrel (PLAVIX) – This drug has a mechanism similar to aspirin in making platelets less ‘sticky’. Although expensive, there are real reasons for looking at Plavix. Firstly, Plavix does not have the irritant effects on the stomach which can occur with aspirin (fortunately rare with the low dose). Neither is it a problem in asthmatics, who may prove allergic to aspirin. Thirdly, huge studies in cardiology, where aspirin and Plavix have been compared in the prevention of heart attacks, have discovered some evidence that, under certain circumstances, Plavix may have the edge over aspirin.
Intravenous Immunoglobulin (IVIG) – This consists of an intravenous preparation of protein (globulin) pooled from a large number of donors. It is extremely expensive, and its action is short-lived. Some years ago, it was found to help in some cases of thrombocytopenia (low platelets) and has since been used in a variety of autoimmune diseases with mixed success. Despite its apparent limitations, it has a good safety record and is being tested in some patients with Hughes Syndrome, particularly those with low platelet counts.
Immunosuppressives – These drugs (most commonly azathioprine and methotrexate) are widely used in autoimmune diseases such as lupus and rheumatoid arthritis. They have proved disappointing in patients with primary APS. So also has plasma exchange – an attractive idea for removing antibodies, but with little convincing published success – as yet.
Antimalarials – hydroxychloroquine (Plaquenil) is an extremely useful drug in lupus and Sjögrens Syndrome. It is particularly effective in helping skin rashes, fatigue, and aches and pains. One of the additional actions of Plaquenil is as a (mild) anti-clotting agent – rather like junior aspirin. Thus, in lupus patients with Hughes Syndrome it might well have extra, hidden, benefits.
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