After 6 weeks I thought I was finally stabilizing. INR was 3.1. But last week it went down to 2.3. Nurse said I was still in range so didn't

change dosage. I now have headaches back which id just got rid of and am back to being clumsy. I no U can't give medical advice but does anyone have ideas on how to convince nurse I need to be over 3 xx

[MaryF Administrator]

Hi, the nurse will need the guidance of the consultant and the consultant needs to have working knowledge of Hughes Syndrome/APS or your GP. Other than that you could hand her out some information from the Hughes Syndrome Foundation - hoping that she will it and hand them on to those above. hughes-syndrome.org/self-he.... Mark it for the attention of the consultant with a copy for GP and the nurse. MaryF

[Manofmendip]

Hello

Who is managing your APS, i.e. setting your target range and reviewing your progress/symptoms, as opposed to checking your INR, as the nurse is? You should get them to give you documentation to show the nurse that set out clearly your target range. If you feel that your symptoms are much improved when your INR is above 3.0 then please talk with who is managing your APS and ask them if they would consider raising your target range and telling the nurse.

Best wishes.

Dave

[Lure2]

Hi, I agree with the above said!

Kerstin in Stockholm

[Hidden]

Thanks for replies. I see the practice nurse who does have knowledge of APS but I dont see a consultant. Just saw haemotologist once who said I need to be between 2 and 3. I would have to get referred back to see him by gp which will take months. I have some books I will show the nurse when I see her Wednesday.

[MaryF Administrator in reply to Hidden]

Hi write a short letter addressed to the consultant with the print out above or any pages of books, and mark it urgent, so she passes it on, (or email secretary), mention in the letter how unwell you feel and could you take an urgent cancellation slot in the clinic? Copy your GP in to it. MaryF

[Lure2]

Yes I agree with what is said. You must FIGHT now to get the INR you need for your APS. Most of us need 3.0 and sometimes more. I selftest and I feel fine at 3.5 My therapeutical range is between 2.5 - 3.5.

The doctors are so afraid that we will have a bleed. I have never had. I am afraid that I shall have under 3.0 Or so low as 2.5!!.

I wish you the best of luck now fighting with your doctor (It is a doctor that has the responsibility and decide about the therapeutic range for you.) to have a higher therapeutic range.

Best wishes from Kerstin in Stockholm

[Hidden in reply to Lure2]

Thank U. I will see what happens at next appointment but I have also looked at list of specialist in my area which I will show my gp hopefully speak to someone who knows about it x

[Bonnie39]

Initially my thrombotologist/haematologist set my target at 2 - 3. However, I felt considerably better at the top of the range so after three months she mover the target to 2.5 - 3.5. Unfortunately I have had several flares (triggered by various infections) which despite being on antibiotics have seen my INR tumble. I am not seeing my consultant until next month so am hoping to get a cancellation. Last week I felt awful and my INR was just 1.6! I am hoping she will get me on Plaquinel to steady the condition as I get scared when I am unwell. Last week I had splinter haemmorages and god knows what else. If they cant stabilise my INR I fear they may have to up my target again.

[Hidden]

I saw my nurse and she spoke to doctor and they have agreed to raise my target from 2-3 to 2.5-3.5. So hopefully this will help xx

[Lure2 in reply to Hidden]

Try to do lab vein test often! Specially in the beginning of this new regim. I did at least every week or sometimes twice a week. Try to be at the higher range .Now I selftest and go to lab every 12 weeks.

We usually need.to keep a diet (try to be as constant as you can) and let them put the warfarin after that regim (your diet). I always eat K-vit veg food every day. If the INR is is too high I eat more broccoli or brusselsprouts and if it is too low l eat less (usually only one day and then the INR will change) But do not change the tablets and ALSO the K-vit food at the same time. That makes it "double" . It is difficult to understand in the beginning with tablets and K-vit food but you learn. Makes NOTES and only change SMALL amounts each time.It takes around 12-24 hours to change the INR with K-vit vegetables and 2- 3 days to change the INR with the warfarin tablets. BUT we are all different. That is important so say so you must try for yourself.

I selftest and therefor I understand how the warfarin works with me.

The most important thing is to eat the same amount and the same food every day. Today I had lunch with a friend in a restaurant and I ate other food. That is ok and I eat some of my ordinary food when I came home. I should say you feel very good on this regim I am retired and can decide what to eat.

Hope it will be OK for you.

Best wishes from Kerstin in Stockholm