Hi everyone hope you are all good
I saw pharmacist today at St Thomas’ instead of my usual APS consultant not sure why. However she wanted to reduce my target range with the Local anticoagulant clinic from 3-4 to 2-3. I only feel well if my INR is 3 and above so I had to argue my case to stay at the higher level. I am triple positive for APS. It was really quite upsetting. My question has this happened to anyone else.
Jo
This is so sad, we build ourselves up to our appoitments in hope we remember everything and have the chance to have our say too!You have every right to question your appointment and request a second appointment before any changes. Write your views to the clinic and request an urgent review?
Failing that talk to your GP.
Thank you Holly.
Hi I am under Guys and St Thomas and I’ve never had any physical appointments anymore just an annual how’s it going? Terrible! Ok well we will call next year to catch up bye! So I feel really sorry for you. I would all the clinic, speak to anticoagulant nurse and ask for an urgent appointment to speak to minimum senior house officer. Pref consultant level upwards. They really need to stop treating us all this way as life can be tough enough without their help in messing it up. I hope it all works out for you and you can get the reassurance you need.
Hi, you definitely need your consultant back in the picture, as this recent professional may not fully understand Hughes Syndrome/APS. Let us know what they say. MaryF
I replied to you one year ago. I am from Sweden and I am also Triple positive with high titres and I should be between 3.5 and 4.0 in INR but feel best around 4.0.
I read that you tried self testing and for me when self testing at home my INR is a bit higher than when taking the blood at the clinic. That is very usual for us when we also are positive for Lupus Anticoagulant (one of the three antibodies they test for APS).
I hope you have got a Specialist who understands our illness well and who can help you to test often and not change dose of Warfarin too often (it takes some time to get INR up and it is easier to get it down with greens than to get it up and not eat so much greens). Test often and write what you eat in greens, the dose of Warfarin and the INR down and I hope you will be able to keep the INR stable and then the Specialist will not be afraid to let you keep a bit higher INR. As you say you feel yourself when you do not feel well when the INR is a bit low. Tell that to your Specialist and hope you can manage to self test rather often. I decide myself about my tests and dose of Warfarin. My Hematologist (Specialist of APS) knows me since several years.
Good Luck
Thank you Lure for your very helpful reply again and I hope you are keeping well. I am on Acenacoumarol which works in the same way as Warfarin slightly more sensitive to any dose changes. I do find self testing a good way to stay in control although I am at the moment testing a lot which causes a degree of anxiety for me. It seems that the consultant I am under is wary of keeping such a high target range 3-4 as they are more concerned about bleeding than the symptoms this disease presents and for me I am unable to function when INR is under 3. I am extremely fortunate that I have never had a clot (maybe this is why they want to lower) but I am triple positive and was advised years ago by Prof Hughes who diagnosed me that my INR should be above 3. It really doesn’t make sense to me surely prevention is better than cure. Thank you again Jo
Oh no, I’m sorry to read that. I just wanted to say that I too feel much less symptomatic with a range of 3-4, I had to fight for it, but as soon as my INR falls below 3, I have a constant headache and feel lethargic etc
Yes, a few years ago some Consultant that was standing in for my rheumy wanted me to change my TR from 3-4 to 2-3. He said that APS patients could run perfectly well at 2-3 and there was no need for such a high INR. I explained that my TR had been 3-4 since I was diagnosed and that I'd has strokes, clots and actually felt 'better' in myself and less 'foggy' at a higher INR. I told him that although I respected what he was saying, I wanted to talk to my haematologist first. Spoke to Haemo and they told me that no way was my TR to be changed and APS patients should have a target of 3-4. Everyone has different ideas unfortunately. My Doc wanted to switch me from warfarin a couple of years ago too because my INR became erratic so again, I got hold of my haematologist and told him (I was concerned about switching as didn't like the idea of not having it monitored) and haemo said again, I was to remain on warfarin and GP had no right to suggest changing it (he said there was something about many APS patients had switched over and they were in the process of switching them back as it wasn't as effective and our blood NEEDS to be monitored. He did explain in more detail, but brain fog, so I really can't remember.
Hello. I am also triple positive. I’ve had the same ongoing problem with my family doctor. I too feel better when my range is 3-4. But my doctor insists I stay around 2.5. I keep mine in the higher range between blood tests, then I deliberately lower it for time of testing. I have test strips and monitor so I can test at home. It’s not a great way of dealing with the issue, but it’s my only recourse.
Good luck going forward.
Bless ur heart. I totally get what you are saying. It makes me so so cross. When we feel better why can’t they leave us alone? When on Warfarin I was the same as you. Under 4 I struggled to get out of bed and had no life. Why do they find the need to change that. I know we can’t go too high but the pain and suffering-I experienced - made me feel it wasn’t worth living when I was on lower INR. And when I’m ill the family suffers so much too.
I wrote a clear, extensive, comprehensive list of why I needed a higher INR and what happened when I was lower. I typed and printed it and gave a copy to my GP, Haematologist, Rheumatologist and anyone else concerned. I took a copy to each appointment too so I could always argue my case properly. They do throw you when they spring these things on us. Maybe we should all do that. Be prepared because it may happen to anyone at anytime.
I think everyone should do this exercise and have a copy in your ‘back pocket’ at each appointment, just in case they try it. Ask family and friends if they notice any changes in you when your INR is lower? Add them too. ‘Family Observations’
I’d like to understand why all of a sudden. They want to lower our targets, or undiagnose APS altogether.
Good luck. Keep us informed 💋 x
Dear Wendy
Thank you for your really helpful reply and I’m sorry this has happened to you too. I will type up a list of my symptoms when my INR is too low. Unfortunately I’m still waiting for them to call me back on this. I did speak to a nice nurse but I don’t hold out much hope they will get back to me. It isn’t right that they do this as they don’t know how it feels. I like you just have to sleep when INR too low as can’t function at all and it does make you feel what is the point in being here so I totally understand you on that. I think they think it’s like having a foggy head from hormones but it’s nothing like that far worse and completely debilitating. I’m going to write a letter to my Consultant Dr Karen Breen and see what happens. It’s so nice to know we are not alone in this horrible situation. Take care Jo
Everyone on here is so supportive
Yes everyone is so supportive. I don’t think I’d be here without having them to lean on. Some of u will remember when I went through a terrible time in 2020 I was posting virtually every day. Yes it’s good to know when u can’t cope u can post here for understanding.
You take care. We r here for you 💋 x
The obvious concern is bleeding. I used to run an INR of 3-4 and had a serious and life threatening hemorrhage incident. For the past ten years or so, I have been doing well between 2.5 - 3.5. Because I’ve been on Warfarin for 30+ years, and my INR is quite stable for the past three years, my doc allows me to self adjust my dosage. When I get nose bleeds, I drink a healthy sized mug of green tea and it puts me back down where I need to be.
It would be great if we could fully rely on the docs to do what is best for us, but I have found that I sometimes need to take some control for myself.
Hello
Thanks for your reply. Yes I get their concern about bleeding and I’m sorry to hear this happened to you. Surely it’s better to have an INR that controls symptoms otherwise what is the point in having anticoagulation.
I wanted them to set my range between 2.5-3.5 but for some reason they couldn’t do that.
I am triple positive with high titres so I get anxious when my symptoms are not controlled and my head feels strange.
I am going to do as you do keep a track myself and adjust accordingly.
Thanks again.
Hi, I am also under St Thomas'. I have only my consultant change my range. The anticoag nurses would not change it when I first asked. What I have found is sometimes when I am out of range a Pharmacist will call and if out of range at the high end they will rush to reduce the dose if out of range on the low end they are happy to leave it for a week. If one of the anticoag nurses call I am glad to say they do the opposite. I have on occasion just said yes to the Pharmacist and then called one of the nurses as they deal with this on a daily basis and i find know what they are doing. I hope you get it sorted.
Hi there
Thanks for your reply. Who is your Consultant at St Thomas’? Mine is Dr Karen Breen but unfortunately I didn’t see her.
Hi, yes I'm under Karen Breen also. Appointments are only by phone still.
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