Hi everyone
I’m new to this forum but have had APS for 20 years. My INR went to 11.9 recently I was given vitamin K last reading was 2.8 but still feeling awful headaches, dizzy and has anyone else experienced this when INR takes ages to get back into range mine should be between 3.5-4.
I’ve never been given vitamin K, but I have been told by others here, that their hematologist’s tell them it can take a while to normalize back up.
Please ask your hematologist what he/ she can expect yours might do, and what you should do in the meantime.
Thank you Kelly for your reply. I went for an INR check Monday and it was 4.1 which is too high now it seems to be yo yo ing a bit but I feel rubbish. Guess I just have to be patient. They can’t really give me an idea on how long they say everyone is different. Best wishes Jo
I've found I get headaches and feel muzzyheaded if my INR goes below 3, especially if it goes down quickly or from a high level. It also yoyos when I try to gradually get it back into range. Everyone is likely to be different, the trick is finding out how your body responds to changes and carefully adjusting things accordingly. It's worth keeping notes to give you clues for future times. Best wishesKerry
Thank you Kerry for your reply and your good advice and knowledge. It is comforting to know that other people have the same problems and to know we are not alone in battling this very unpredictable condition. I do hope you are doing ok and I wish you well. Warmest wishes Jo
I am right now. 2 yrs of severe I'll health and little treatment. At least Ur getting treatment Hun. Dr told me heat make condition worse as well. Hydrate like crazy he said as we are having an unusual very high heat spell here.
See leading professors this week. Told gp if something isn't done soon I can't do this anymore. It's 2 painful n keep falling everywhere.
So sorry to hear you are struggling Heather. If you can try and get some treatment at St Thomas and Guys or the London Lupus Clinic Professor Hughes or Dr Kaul they are very knowledgeable about APS . I know you said you are seeing experts this week so hope that you get some answers from them. Best wishes Jo
Heather hi, sorry to hear about the health struggle and wishing you strength and getting back to top form. I was wondering about the comment about heat making us feel worst by your doctor? Cause I am also struggling in the heat with pains etc … why would heat make us feel worst with APS?
Hi there, just about the heat. Heat thickens the blood, which causes blood clots.That is why we feel worse in the heat. Those newspaper reports of people dying because of the heat, They have a stroke or heart attack, well they have clotted with their thicker blood. Not enough advice is given to the general public about the necessity of hydration during these heatwaves. best wishes
Hi,
I am triplepositive with high titres and I have Warfarin with an INR between 3.5 - 4.0. I selftest very often as my INR can change a lot suddenly. I have never though had such a high INR as 11.9.
Now I wonder a couple of things. Do you see such great Doctors as prof Hughes or Dr Kaul? How often do you test your INR? You have had APS 20 years. I have had it since 2002 and eaten Warfarin since 2012. As I am able to selftest as often I wish I can manage my INR very good. I have a machine called "Iline microsystems" here in Sweden. As I selftest I only go to the hospital lab when I wish or(very seldom) when I take the usual bloods before I see my Specialists. The Coaguchek machine I could not use as it was a too big difference between the fingerprick-value and the value in the vein. Now it is only 0,2 between the two tests so that is very good.
4.1 is very good I think. Just eat a little more greens the next days (but not too much then it will go down again). The veinvalue is always the correct INR.
It is very difficult to get the INR up again. I have forgotten my Warfarin a couple of times and the next day I am down at 2.2 perhaps. Then the next evening I take my 2 tablets and one more. Then the usual amount and avoid greens of course till I get it up.
When I have too low INR I take a shot of LMW Heparin, called Fragmin here.
If I am under an INR of 3.5 I always take a shot of Fragmin in the stomach.
I am so lucky now to be able to test and monitor my blood myself and after some years I know how to do it. Important to write everything down and also what I do to get it up every time it is too low. Not often that happens nowadays, as I have a call from my mobile every night, so I will never forget it.
I wonder how the INR could be so high......... why...... have you asked yourself.
It is much easier to get it down with some greens than get it up. That can take 2-3 days perhaps.
Also you and I have the same INR (3.5 - 4.0) but all the same we can be very different as we can have different antibodies positive and different titres and different symptoms etc etc. It is good that you can be at an INR of 4.0 as probably you need to be there to be without symptoms. I guess you have noticed that of course. Today I had an INR of 4.7 so I had to eat just now 7 brusselsprouts. No greens tonight and tomorrow in range I suppose. I test very often.
HiThank you for your very informative reply it is most useful and comforting to know others experiences with APS and INR. Unfortunately my INR went to 11.9 due to an antifungal tablet called Fluconazole prescribed by my GP. I was warned it could interact with my anticoagulant but the clinic only tests me once a week. Because of this horrible experience of feeling so unwell for past month and having it go so far out of range I have now purchased a CoaguCheck to test my own. I have to have a consultation with clinic first and run a few weeks parallel with venous bloods first to check levels. Interesting you say CoaguCheck being different from the venous sample I will have to watch for this. I have also read that depending on which antibodies you have can affect the result. I am waiting on my consultant to confirm my antibodies. It sounds like in Sweden things are far more organised than here in the UK. I have seen Professor Hughes several times and he diagnosed the lupus and APS. Dr Kaul a friend of mine sees who is also very knowledgeable. I am now under St Thomas Prof Hughes does private work at the London Lupus Centre as he retired from NHS. I had a n INR test last Friday which was 1.5 hopefully tomorrow it will be nearer my range although I’m still feeling dizzy and nauseous from time to time so probably not there yet. I admire you for being so in control of your INR. I have never had a problem before so I was probably a bit blaze about taking the anticoagulant but this episode has made me realise how important it is to take care and be mindful of what we put into our bodies. Sorry this is too long a reply. Take good care of yourself and I hope you INR is back in range soon without the greens!!
Warmest wishes Jo
I am glad that you will be able to selftest because once a week is for most of us too seldom and it is very important to have control of our blood that it is thin enough for our symptoms. That is different from person to person also if you have both APS and SLE/Lupus. Usually when we are positive to Lupus Anticoagulant we can be very unstable.
So good you have got so good Specialists around you. But you should have some shot like Fragmin to take when the INR is too low !!
Good Luck. Avoid greens now for some days till the INR is in range.
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