Warfarin….. again.

[Croyboy01]

What is everyone’s INR level. I’ve been told that mines should be 2.5. But I’ve noticed that some people’s are 3-4. So I’m worried that mines is too low!!

[Lure2]

Hi again,

Did you find a Specialist?

I suggested you should try to learn as much as possible about your illness APS.

"Sticky Blood Explained" by Kay Thackray is a very good book ( I mentioned it to you before) to understand how it is to have this too thick blood that has to be enough thinned for our body (we are all different). I need around 4.0 in INR and if my INR goes below an INR of 3.5 I have to take a Fragminshot to get it up at once.

I do hope you will find that Specialist who can help you to get a higher INR than 2.5.

Try to get some help to find a Specialist as that is so very important for your health.

What therapeutic value has your Blood-Doctor given you .... 2 - 3? It must be a Doctor taking care of that important thing.

[Croyboy01 in reply to Lure2]

I’ve only been sent to the anticoagulant clinic. They can be very unhelpful when you ask questions. As in, we only give out warfarin as a response to a question.

[Stella in reply to Croyboy01]

That is why you need a specialist to oversee your care. I finally got a referral to St Thomas's (many years ago). They will be able to instruct your local hospital anticoagulant clinic what your dosage should be. I feel best at 3.5 to 4 and also take hydroxychloroquine. My cognitive abilities definitely deteriorate the lower my INR is. Once you have established your optimum dosage you might even consider self testing in the future. It gives you much more control. I usually test at least every five days, more if necessary. As with many people here, I inject with heparin if my levels go below 3. Good luck.

[MaryF Administrator in reply to Croyboy01]

Hi, you need a specialist who fully understands Hughes Syndrome/APS who will set your INR according to your individual case, some need a higher INR with APS, but not everybody. MaryF

[Lure2]

I am sorry if I have forgotten who the Doctor was who gave you your APS-diagnose.

Most probably that Doctor decided that you needed Warfarin for your APS also. That Doctor who dicided about the Warfarin must have decided what therapeutic level you should keep for your APS.

It sounds as if you have got too low INR and most probably you have not yet talked to a professional Specialist of autoimmun illnesses like a Rheumatologist or a Hematologist.

Get to such a Specialist as fast as possible before the wrong Doctor gives you the wrong anticoagulation. Read that book I talk of also.

[Lure2]

Hi again,I just now read that you were in hospital 9 months ago with brain clots (venus sinus thromboses).

Did you have 3 or only one positive antibody twice which gave you the correct diagnose of APS. I think you said you were positive to Lupus Anticoagulant.

I do hope you now will look for that Specialist we all talk of here. We all know how very important it is for us to find such a competent Doctor as so many do not know much about our illness. That is a fact and we just have to fight for our life. We do not want a stroke do we? I am also positive to Lupus Anticoagulant (LA) . Not all of us get clots that can be seen on a normal Scan of today as they are too small and difficult to see.

I live in Sweden and have had primary APS for 18 years. I have all the time been tripple-positive with high titres and with microclots that are not been seen so they were at first not sure if I needed Warfarin and I did not like the idea of "ratpoisson" either. When I started Warfarin in 2012 I at once was better and Warfarin has been my lifesaver. I selftest a couple of times a week at home so I can follow my INR and keep it steady at an INR of around 4.0. Kay Thackray who wrote that book about APS she herself has APS and also neurological symptoms like you and me.

[Croyboy01 in reply to Lure2]

I was diagnosed by the neurologist that I saw at the time. I was then referred to haematology at a hospital closer to me. But I don’t see the haematologist. It’s a nurse led warfarin clinic. Every question you ask, is like an argument with them. I’m going to see the neurologist again at the end of the month anyway. She’s easier to talk to. So I’ll put my concerns to her. Hopefully that gets me somewhere!!

[Lure2 in reply to Croyboy01]

Hope you will follow some of the advices given to you. The most important is to get a Specialist who understands what you talk of and who can give you the correct drugs.

Hope the Neurologist was an APS- Specialist. Very often we have found here that the Neurologists do not get that we have first of all too thick blood that has to be thinned.

[Croyboy01 in reply to Lure2]

I’m pissed off with the nurse in the Anticoagulation clinic. They just don’t listen. The senior nurse, is determined that my condition is venous sinus thrombosis. Even though that clearly just a symptom of APS.

[HollyHeski Administrator in reply to Croyboy01]

Please refrain from the anger; but I totally emphasise, APS yes Is totally different to any another thrombosis. But we need to educate others- your INR is unique to you- strive for that?

[Croyboy01 in reply to HollyHeski]

I know pal. But life for me is so frustrating just now. All of this has just landed on me at once. I’ll get used to it eventually lol

[kiminabmw]

Hello, my nephew (CAPS survivor) is 45 years old and was diagnosed with APS 6 years ago. His Specialists (Rheumatologist and Hematologist) want his INR between 2-2.5, which I have questioned many times. He is on Warfarin. The reason given is because in my nephews case, he has also experienced Diffuse Alveolar Hemorrhage, in both lungs. So for him, it's a fine balance between keeping him from clotting, and preventing him from hemorrhaging. As soon as you can get into a Specialist, I think they will explain everything and get you on the right dose, for you.

[KellyInTexas Administrator]

ard.bmj.com/content/annrheu...

This should help clarify

I am in the unfortunate very small group of patients who continue to clot despite being properly anticoagulaed.

I have been switched to LMWH, etc etc. every 12 hours, high intensity. Blah blah blah…. Added clopidogrel, and a statin. Still clotted with DVT’s in two weeks. ( Doppler scan.) Blah blah blah blah blah…. ( at this point I feel like it’s snoopy and Charlie Brown from Peanuts… and the adults are talking in the back ground in the animated cartoons … “ wah wah wah …” no idea… it makes no sense. My body is just ridiculous.

I was trialed on high dose apixiban- 15mg am, 15 mg pm… final dose 20 mg pm… only for a week- developed 3 DVT’s , TIA’s snd seizures. ( scans shows DVT’s.

So now I’m back on warfarin at inr of 6.5 and rituximab infusions every 4 months . It’s working .

[Croyboy01 in reply to KellyInTexas]

I was on apixiban for 9 months. But after my 2nd positive for LA. That was ruled out. Because apparently it can cause clots with patients with APS. But they had me on it for 9 months. Lol

[KellyInTexas Administrator in reply to Croyboy01]

I was on a higher than normal dose- but yes. It’s not indicated. ( in most cases)

[WendyWoo50]

I was on Warfarin for 5 years. My INR target was 4 (3.5 - 4.5). I could almost correctly guess how my INR was based on how I felt. Under 3 I was in too much pain to get out of bed and had to take Clexane injections. Under four I suffered Migraine headaches that worsened the lower I went.

Then my INR went wildly high for no apparent reason. I was in hospital twice with INR of 19 (diet followed, no med change, no infection). Vit K brought it down but it shot back up.

Due to my unstable INR the consultant said “I’ve got to find something else you can have or this is going to kill you!”

I have been on Apixaban (Eliquis) I’m been much better. There is no regular testing either.

Long answer but I wanted to explain. Good luck. I had to fight for a target of 4. The haematologists are scared of thinning ur blood that much but in the words of Professor Hughes :

“APS is a clotting disorder not a bleeding disorder. X

[KellyInTexas Administrator in reply to WendyWoo50]

I’m so thrilled to hear your good news!!!

[Croyboy01 in reply to WendyWoo50]

I was on apixiban. But when my 2nd positive came in. I was told that apixiban could cause clots with APS. What the study was for that, I have no idea. Good luck Wendy. Xx

[WendyWoo50 in reply to Croyboy01]

Bless u how awful. I was told that. It was a very small study carried out on triple positive APS sufferers. I’m only one Lupus Anticoagulant Positive so the consultant thinks I’m safe. She retested me prior to prescribing it.The thing is Warfarin was killing me. It was up n down like a yo-yo it could swing from 19 to 3 in hours after vit K which made me feel terrible, my obs all dropped… says we’re low I was in shock and hypothermic a terrible experience. Luckily I was in hospital at the tome. That happened twice in 10 days once.

My body couldn’t take it. When the INR was under 3 I couldn’t get out of bed.

With Apixaban u don’t get the wild swinging. Or have to travel 20 miles each way to hospital once or twice every week for testing.

I have my fingers crossed I’m ok. Hope u r ok 💋 x

[GinaD]

In summary.... we're all different because science still has an incomplete understanding of which biochemical reactions go haywire to produce the sticky blood of APS. This is why it is so important to consult with a doctor who has experience treating APS! You want someone who gas seen it all( because there are so many variations to see!)

[marco_mustard]

Usually my inr is very stable and within the target of 2-3. Yesterday yikes a record for me 7.1 And feeling dizzy and lightheaded.

They kept me in the clinic and then took a blood sample - which today the pharmacist on the phone said it was 6.4 When I got home I took 300mcg of Vitamin K and felt better within 10 minutes.

So what caused this? Suspicion is directed towards a new asthma preventer spray (steroid) or possibly the 20000iu vitamin D twice a week for 10 weeks- I am prescribed. If I continue to be unstable, I'll have to get a home CoaguChek machine. It wasn't worth it while I was on 12 week blood tests.

[Zezes-nan]

Hi Like you I was concerend that the anticogulation clinic had the wrong range for me which is 2-3. I was diagnosed with APS in 2010 following a double PE. Been on warfarin ever since. I'm mentioned this several times to my rheumatologist and the anti cogulation nurses and they all insist that its the right range for me. Trying to get referred to a specialist but PCT say a rheumatologist is sufficient and can't afford private. Only had one incident when INR was high went up to 6 had to sit in A&E for 3 hours, given a vit K shot and sent home. Went back next day and inr was back in range.

I think the problem with APS is not many people are aware of it and if the hospital set your inr the anti cogulation nurses don't question it

[Sher78]

I think your target INR all depends on your medical history too. I had a stroke & numerous clots. Mine is 3 -4. They don't like me to go above 4 because I bleed into joints & muscles easily (due to other health issues) but when I go below 3, I start to get neurological issues. Have also had clots when my INR is below 3.