A new recommended INR?

[sbncmo]

After my husband was diagnosed with APS, I found the old APS/HUGHES website, read about recommended INR levels based on Professor Hughes research & I was excited to have this knowledge. I printed out Prof. Hughes guidelines that stated people with APS should maintain an INR of 3-4 & took it with us when we visited our primary doctor. We had a long conversation about APS, with me referring to the info I'd printed out on Prof. Hughes research, pointing to comments in it, asking questions about it & she was quite knowledgeable about it, but when it came to INR, she disagreed. I asked her how she felt about Prof. Hughes recommendation, she left the room & came back with a printout that said to keep an INR of 2-3. Against my better judgment, a compromise was met: an INR of 2.5 - 3.5. At the lower end is when my husband feels blood clots moving around.

It is also at the lower end that he had a blood clot lodge in his upper sinus cavity a couple of years ago which caused the vein to rupture, an aneurysm, resulting in a great loss of blood & a long, long recovery.

This year, he started seeing an oncologist, having Lupus antibodies confirmed, as well as being diagnosed with Polycythemia. He is doing well with that now. However, his oncologist stated he is concerned over the weakening of the arteries & veins due to taking Warfarin, saying the fact that he has had one collapse & rupture already is a good indication that his veins & arteries are getting weak. And his oncologist said something about a new standard for a lower INR for people with APS. About the same time his oncologist said that, our pcp said the same thing & now wants to keep his INR to be 2 - 2.5.

So, I'm just wondering if anyone else has heard of a new recommended INR level based on artery/vein fragility. I would think it would be more dangerous to have it low & end up forming clots, but I may be wrong.

[Hidden]

Yes, there is a lot of contention between APS experts of what the INR range can be set at. I have heard that in Bath, for example, they adhere strictly to the 2.0-3.0 while in London they are happier to go between 3.0-4.0. I think a lot will depend on the experience of the specialist as to how confident they feel to go above 3.0.

The long awaited guidelines were published last year for the British Society of Haematology and recommended that the target INR "should normally be 2.5" - please note this is a recommendation and it uses the word "normally" indicating that there will be some exceptions to the rule.

The whole paper was rather on the safe side - naturally the authors are putting their reputations on the line if they are wrong and could also be sued if someone had a bleed due to their INR range being too high. They were completely dismissive of sero-negative APS as "contentious" and a theory which is "difficult to sustain" - however, they did recommend testing for aPL automatically if a person under 50 has a stroke which is some progress at least!

If anyone wants to find it - the title is Guidelines on the investigation and management of antiphospholipid syndrome and it was published in the British Journal of Haematology.

[sbncmo in reply to Hidden]

Thanks for writing, Kate. Wouldn't it be wonderful if all APS experts were on the same page about the INR range? I remember reading Professor Hughes info when I first found the APS site & learning how people with APS should have an INR of 3-4, while others "normally" have an INR of 2-3. It is frustrating to deal with doctors who disagree with those levels. I know my husband feels so tired & lethargic when his INR is below 3, plus he starts feeling clots moving thru his lungs, up his arms, etc. His INR needs to be 3-4.

[Hidden in reply to sbncmo]

Yes, it is frustrating when you have to fight your corner to get a higher INR to be free of symptoms - just what you don't need when you feel ill. Please feel free to print out the HSF's factsheet on APS and INR: hughes-syndrome.org/resourc... - this information has been approved by our medical panel including professors from St Thomas' and University College London and I hope it helps your husband make his case.

[sbncmo in reply to Hidden]

Thanks for the link to the factsheet. We both need to be educated. My husband especially, since he gets facts about APS mixed up & doesn't do any of the research on it. I'm not putting him down in the least, he just doesn't do research & he inherited the mixing things up from his mother. But, when I write things down or print them out & give it to him to read a few times, he understands it, so he needs that factsheet. And he has just started to do research on his health conditions in the last month or two, so this will be a big boost for him. He wants to understand what he is dealing with.

I really hope it helps us in our struggle with doctors as well. We have both been frustrated with fighting them. He refuses to go to the ER now because all the doctors say it's impossible for him to feel the blood clots moving, even though this has led to being untreated for TIA's.

We have been happy to hear, though, that people who are studying to be nurses are now being taught about the shape of blood cells that have combined forming clots & how there are sharp points on them & that many people with APS DO feel those clots moving. My husband was so happy when a student nurse told him that when he had gone in for a doctor's visit - the nurse who had been there for years had no knowledge of the clots being that way. Now the docs need to get on the ship going in the right direction for his INR.

Thanks again, Kate.

[Jade]

Oh dear, that doesn't sound very hopeful.

I have an awful feeling that Professor Hughes good work is being slowly eroded. After he retires I think we will really struggle.

I can see now why, when I saw a haematologist once she was adamant that I should not have a range of 3.0 - 4.0, she was very agitated and said she would set me at 2.0. So consequently I will never go back to her.

The professor has now told me to stick to 3.5, if I can.

I really worry what our future care will be.

[sbncmo in reply to Jade]

Hi Jade. I'm in agreement with you. I think an INR of 3-4 is best & I wonder about Pro. Hughes excellent work & what the future holds.

[sbncmo]

I'm shocked that so many doctors accept these guidelines as a basis for INR levels now when the are done on only 223 people - 223 people! To me, that is just unacceptable. Doctors often go with some consensus or recommendation when it comes out, thinking it is an improvement, & many times it thankfully is. But I think the guidelines are wrong in this case. I hope I don't sound harsh in my stating my opinion, but that's how I feel. It scares me to think that doctors make this change based on studies done on so few people. After all, it is a guideline, just as you said, and not a rule for treatment now.

Yes, we are indeed between a rock & a hard place. I know it is difficult for his doctors to reach that delicate balance of keeping his blood from clotting yet not having his INR maintain too high by Warfarin so that his veins & arteries get weak & break down. His greatest problem has been the blood clots & TIA's, so I'm in favor of keeping a higher INR to reduce the blood clots. At least when he has a large blood clot he can feel it move & knows where it stops.

Thanks for letting me know about this new study. I'm going to look at your link to read more about it.

[sbncmo]

Thanks for the link.

[annie330]

Would it be worth talking to your husbands doctors about injecting heparin rather than taking warfarin. Don't know if it would be suitable but when I was first started on blood thinners this is what I was given, I don't know fully how it works versus warfarin but it doesn't increase your INR. I have other issues besides APS but I think they tried the injections first to see if I felt better with my blood thinner ( I suffer with constant headaches and have had a few TIA's and clot in my back), they then moved me to warfarin. My original range was 2.0 to 3.0 then it was changed to 3.5 to 4.5 but I still didn't feel great so they talked about trying the heparin again but for now they have dropped the INR range back to 2.0 to 3.0. They did tell me that ranges were being dropped!

It might be worth bringing up heparin and seeing if that would interfere with your husbands other issues, what do others think ?

[sbncmo in reply to annie330]

Hi Annie

He gets heparin shots during periods of inactivity, such as being hospitalized, but that is the only time his doctors want to give it to him. I just looked heparin up on the Mayo Clinic website to learn more about it. I thought it thins the blood quickly & dissolve blood clots quickly as well, but I was wrong. According to the Mayo Clinic website, Heparin "does not actually thin the blood. Heparin will not dissolve blood clots that have already formed, but it may prevent the clots from becoming larger." This is different from what we have been told a number of times.

It may be that his doctors don't want to give it to him on a regular basis because he has developed hypertension in the last couple of years & the 2 don't mix. Like you, he has developed other issues in recent years.

Yes, it would be worth asking his doctors about, just to see what they think. Thanks for the suggestion & sorry to hear you are getting your INR ranges dropped as well. Let's hope that won't last very long & your docs will come back around for you so you can feel as good as possible with all you are dealing with. Best wishes.

Shelia

[tim47]

After being dismissed from the St T's outpatients list on supposed clinical grounds (!) I have had to find other ways, with GP support, of resolving some outstanding issues. I have been to see Prof Hughes again. I also attended another hospital in London not unconnected with St T's (but better not say with who just at the present) and felt that it was thought that I should not have dropped off the St T's radar. I have been referred to another Rheumy, still some distance from home, but well out of London and much easier to access. I also have to go back to another dept at St T's who will, I hope, resolve a long standing issue that my local hospital has failed so to do - more detail later when I know what's what and how it all works out.

However, during some lengthy conversations in London it seemed clear that some there are moving away from Prof's ideas - and I fear the battles may start again!. For my part, I had multiple TIAs when my INR was 3.3 and, although I have since had a hole in the heart closed, I intend keeping to the target prof set of 3.8 to 4.0. I intend to fight any suggestions of change to that target vigorously. I experience many occasions when self-testing enables me to get back to my target quickly and I take every opportunity to point out what a (literal IMO) life saver it has been for me.

I have generally been very lucky with my GPs and most consultants, good knowledgeable people practising medicine for the right reasons still and I do feel for those who are not so fortunate. My dentist, who has just gone off on maternity leave rang me on her last day to enquire about some on ongoing issues re xerostomia (dry mouth/ sjogrens?) and even wants to know, whilst she is on maternity leave, how I get on with certain appointments and has told her stand in that I am "an extremely interesting case" and she wants to keep up to date.

Again, I am fortunate indeed to have another medic who is both genuinely interested and caring.

[sbncmo in reply to tim47]

Tim, I'd say you are more than fortunate, you are blessed to have the medical support you have that does support you & that doesn't fight you like so many of us have. It sounds like you got into a bad situation with St.T's & I hope you get all of that worked out.

I just can't figure out why the medical field wants to move away from Prof Hughes work. Get this - they want my husband's INR to be 2-3, yet when I had lab done last week & was looking at my Protime INR, it says 2.5-3.5 for artificial heart valves & recurrent embolism. So, here he is having blood clots, embolisms, all the time & they want to lower his INR? It doesn't make sense to me. Yes, the battle is already starting.

I'm glad you can self-test. We have looked into self-testing here. Being in a small community I isn't available to us & us being on a limited income, we can't afford it. We would really like to do it & control it ourselves - I think he would feel better, a lot less tired.

That Sjogrens is a nasty thing to deal with. My mom has it along with several other issues & she really suffers. The dry mouth is part of it. She went for years with no one diagnosing it, then she finally walked into a new specialists office, told him a few symptoms & he said "You have Sjogren's."

Let's hope you keep getting the right doctors so you don't have to fight any of them. And keep us up to date!

[tim47 in reply to sbncmo]

Sbncmo. Feel for you in your situation. I think in days of 'patient choice', it means nothing if we cannot influence our own INR levels . Hope it works out for you before too long.

[sbncmo in reply to tim47]

Thanks Tim. My husband just had his INR checked this morning - 3.3, a little lower than a month ago, but at least it's above 3. I'm going to keep checking into self-testing for him. Surely I'll be able to find test unit affordable enough one of these days.

And I think you're right about patient's rights. Everywhere you go you see the signs about patients rights, but when it comes down to it, we don't have much say in it unless we are really willing to enforce our rights & face the medical field down. That isn't that easy to do. I'm learning to do it & it feels great, but my husband doesn't like to fight them, except on a couple of things, & he isn't comfortable when I fight them. He's coming around though. It's hard to do. We tend to think we know nothing, they have years of education & more training every year, they must know what they are doing. But it doesn't necessarily make it true on everything.

Let's hang in there.

[tim47 in reply to sbncmo]

I understand how he feels, but these days we seem to be forced into taking much more responsibility (and sometimes at a level that almost requires a medical degree), especially when we see so many consultants (my highest was nine at one time-nightmare) who may not talk to one another as much as they should. We have to look out for ourselves as best we can whilst not setting out to be difficult. I hope you come across a machine son. Meanwhile I wish you both well.

[sbncmo in reply to tim47]

Wow! Talking with 9 consultants at one time - that must have been tough! You must have felt like they were ganging up on you. But, isn't that true that consultants don't communicate with each other as well as they should, & certainly not with us. The lack of communication between the doctors & us made us so angry when my husband had his aneurysm.

Here he was, blood pouring out of his nose, with them sticking things up inside his nose, raising his blood pressure to stroke levels & not slowing the blood flow at all, him throwing up large clots of blood - he was in seriously bad shape. They had called the ENT when we first arrived in the ER & he wanted to operate immediately, cauterize what he was sure was a ruptured vein. The ER doctors told him no, they didn't think he was right & wanted to stop the bleeding their way. When my husband had lost 45-50% of his blood in 3 hours, his life being in greater risk by the minute with what they were doing to him & he was semi-conscious, they stopped their attempts & called the ENT again to have come immediately for surgery. But by that time, he was in such bad shape, he couldn't be operated on & was to be sent to Intensive Care to be stabilized before he could have the cauterization done. That's when the ER doctors told us they had called the ENT 3 hours earlier. If they had told us about calling the ENT the first time, we would have said to get him in there that minute. It has taken my husband years to recover from their incompetence & irresponsibility in not keeping us informed so we could say what we wanted to do in his treatment.

That is nightmare I hope no one must face. It still upsets me to think about it. Maybe it is why I am more willing to speak up for myself & for him when it comes to medical care. I'm not a difficult person, in fact, I'm a very passive person. But some things I can't let pass by now. I won't let them pass by without saying something. But I will always be kind & pleasant when I bring up my point - to a point.

I will always fight for my husband. It's okay if he doesn't feel able to do so as much yet. He is a wonderful man & is still learning how to deal with medical things. He went from never being sick to suddenly having PE's, TIA's, an aneurysm, painful blood clots in his chest that he's seen ER doc's about who say he can't feel them & basically don't believe him, so he won't see them any more, etc. A major life change for him, as it has been for anyone with APS. He 's learning. All of us are learning.

Sorry, to go on like this, Tim. I sure hope your doctors work out well for you. I hope none of us have to fight that hard to get the best care we & our loved ones need. Best wishes to you.

Shelia

[tim47 in reply to sbncmo]

That's a heart breaking account but good for you sticking up for your man. I hope that you get the consideration and care you both deserve soon. Your account makes me even more conscious of how fortunate I am. Very best wishes. Tim

[sbncmo in reply to tim47]

Thanks, Tim & continued best wishes to you in your search for the best care possible.

[AvsG]

What an awful time you are having! I was diagnosed with Hughes Syndrome a couple of months ago by Professor Hughes. I was diagnosed with Antiphospholipid Antibody 22 years ago but no one put my illness down to Hughes Sundrome. Professor Hughes recomended an INR in the high 3s and to self test. This did not go down well at the Warfarin clinic. The nurse excluded me from her clinic. I was angry at the lack of support or understanding for self testing. I have since been to hospital and seen Vascular specialist (recommended by Professor Hughes). He knew all about Hughes Syndrome and fully supported self testing. His department will support me so I don't have to go back to the Warfarin clinic. He's writing to my GP and emphasising the importance of having a high INR. He suggests 3.5 - 4.5 in order for me to feel well. I can't recommend self testing enough! I have good control and feel safe. I do hope you find the support and understanding for your husband. You have to keep pushing until he gets the right care.

[sbncmo in reply to AvsG]

Thank you for the encouragement & understanding, AvsG. We need Pro. Hughes everywhere it seems, or those in the medical field to be required to pass a course on his knowledge of APS & other disorders that he has worked with. Then we wouldn't be having such a fight.

I understand why you were angry at the lack of support & understanding. We still feel that way. And all of us run the risk of facing that lack of support & understanding every time we go somewhere away from a doctor that does support us.

I will keep pushing for my husband to get the right care. I want him around for a long, long time. And I'm going to keep looking & pushing for the self-testing as well.

Best wishes.