Hi everyone. Not been around for ages. Am popping on because it's now my turn to face possibly being undiagnosed
I am worrying because I have received a bridging plan to come off warfarin to retest anti phospholipid antibodies, which is fine, but the letter says 'to reevaluate aps diagnosis'
I always believed that having tested +ve on multiple occasions, you don't lose the diagnosis.
My history was DVT in 2002, +ve for a while for anticardiopilin antibodies.
Recurrent miscarriage (7)
Treated with clexane in pregnancy 2007/8 and 2010
2014 - started to suffer with dizziness and severe migraine, fell and broke shoulder. Shortly afterwards, TIA. Tested +ve twice at Kings for anticardiopilin and anti beta2glycoprotein very high titres. Went onto warfarin.
2015 - to St Thomas's
Triple positive
Started on hydroxychloroquine
2015-date
Cognitive difficulties - PET scan showing hypo perfusion in the temporal lobe. started azathioprine which seems to have helped.
Slow heart rate and low blood pressure, referred to autonomic unit at queens square (improved by sitting with my legs up etc)
Over a few years, Various experiences requiring hospitalisation locally - thunderclap headache, chest pain/dizziness and vertigo.
Extreme fatigue and pain in joints and muscles.
I know that my last blood tests I was +ve only for LA but I am not at all happy at potentially being undiagnosed.
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Fusch
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I don’t know the system in the UK with seeing specialists, I hope someone puts it all together and comes up with treatment plan for you. I can relate as my disease is causing neurological symptoms which is maki g my life unbearable. I hope you get relief, I’m being patient, and seeing the doctors I know will help me… I just keep saying it’s a marathon NOT a sprint…I may have messed that up with my brain 🧠🤪, but for the record I hate running too 😂…best of luck to you
Your absolutely right - have they not discussed this with you?I would write back and request more information to why they need to do revaluation - as bridging in itself has its risks.
With your history I'm totally confused to why they ate doing this?
YeahOriginally they were talking about a move from warfarin to apixaban, which I am very cautious about.
Then somebody called and asked if I would join RISAPS trial (rivoroxaban, which was in the TRAPS trial they pulled the plug on)!
Then I got called saying they wanted to take me off warfarin to test me before possibly changing blood thinners. Then the letter said it was to reevaluate diagnosis.
I can see the background but would still question them to revulating and your concerns to changing anticoagerants?I was on the original rivoroxaban trial as I'm unable to take warfarin- after 2 years I noticed no changes in my bloods other than if I cut myself I bleed more, no changes in any other symptoms either. I was pulled off it as I'm triple positive and put back on heparin.
It may be that they are revaluation due to the risks of further clots and maybe it will improve your symptoms?
If everything is OK with warfarin you have every right to question or refuse an alternative.
My view though, is to keep an open mind, make sure you understand whys and what for's so you can take an informative choice.
I agree completely with what HollyHeski is saying here, patients MUST be involved in decision making, there seems to be an awful lot of this going on at the moment, which is a real worry for so many people. I hope you get to have a proper telephone conversation with your consultant/prescriber regarding this. MaryF
As HollyHeski says I would not do anything until you have asked a lot of questions and got answers your happy with. They can’t dictate to you and with your history I’d definitely be cautious about stopping the warfarin. I’d want to know what they thought caused my previous clots and antibodies and if that can’t be answered properly I’d refuse point blank any changes . Your right antibodies do go up and down and you don’t just lose a dx of APS. Who at St T dx you originally? Can’t you ask to see them? I do hope things work out for you.
Diagnosed at kings, confirmed at St Thomas's by B Hunt. Triple positive. But after 7 years on hydroxychloroquine it seems I am now only single positive
We spoke 3 years ago and then you were on Warfarin and I suggested you should try the higher level of the Warfarin as INR 3.0 usually is too low to help with the symptoms. I donot know if you did and if that helped. You selftested I think at that time.
As I understand it you have had all three antibodies from time to time. You have had typical symptoms from APS and I wonder what Doctor who is now telling you to stop your anticoagulation treatment. Are you now on Warfarin?
Once diagnosed with symptoms and antibodies always APS. It will never go away. Symptoms can go away for some time and also antibodies but they may very well and also most probably come back suddenly when you are not expecting they will.
Is there a paper to explain that once you have APS it never goes away? I too was undiagnosed by a hematologist and taken off meds. Will retest in March. I would love to show him something to read.
Sorry. I live in Sweden and I do not know where you could find that special paper in your country. Get yourself a Specialist who has got the knowledge!
I have no advice. I was once triple positive and had multiple DVTs and mini strokes prior to dx. and warfarin. After going gluten free in 2004 I am now triple negative. Some hematologists I have seen in these recent, triple negative years have advised that I stop warfarin altogether. My response is then, " No. No..... NO, I'll get a grow light and plant some curare ( sp?) and treat myself." But my current hematologist and I agree test given my history and my congenital a fib we should experiment with lowering INR to see how low I can go with no symptoms. We keep my INR @2.5 but I have been symptom free if it drops as low as 1.7. So..... should I stop warfarin altogether? ??? Until science explains exactly which domino/ molecule in the coagulation cascade is defective, I think I'll stay on warfarin. ( ... or until my aging skin makes warfarin more threatening then a return of APS symptoms.)
Have you been tested for coeliac disease, gluten intolerance or allergies of foodstuffs that contain gluten. Coeliac disease is an autoimmune disease. Do you have any other unexplained symptoms when you eat gluten. I would advise you see your general dr to discuss this further. To be tested for coeliac disease you do have to eat a normal gluten inclusive diet for 6 weeks before the blood test. I tested positive for this in 2017, and can only speak of my own experience. Going gluten free completely after many tests has had no effect on my APS symptoms and outcomes though
I tested negative from a celiac test, but all my doctors agree that fo whatever reason, a gluten free diet is essential. I was anemic from age 4 until a month after gluten free. Cleveland Clinic Functional Medicine put me on a difficult elimination diet which revealed a sensitivity to cashews. My observation is that APS is classified as a " syndrome" because a clear origin of the illness has not been identified. Also, there is so much variety in our effective treatments. Hence my (uneducated -I'll admit it!) theory that our immune systems can react to and attack different dominoes in the coagulation cascade. Many of us do well on warfarin. Others eliquis. Others heparin. Etc. I remain on warfarin, and avoid gluten. My interpretation may be wrong, but I think my body is telling me that gluten sensitivity is the root cause of my issues. And no doctor understands why my essential thrombocytosis came and later went. I think it was the anemia which elevated white blood count. Then my immune system rightly decided to attack white cells. Result? APS.
I can’t take warfarin myself, it just doesn’t work. My haematologist put me on acenocoumarol 9 years ago and I respond much better to it. We’re all different and unique, and all have trigger points for blood clots in the case if APS. Mine are completely random and my Inr is still irrational to this day with no rhyme or reason to it. If your dr and specialist confirm it has a connection with eating gluten, then it’s the only advice you need. As for bridging to retest reevaluate for APS they must feel confident you won’t suffer a clot
Hi I’m in the uk and was diagnosed with APS but didn’t go onto warfarin until a few years later after a Venus sinus thrombosis. In 2016 I had more blood tests which did not confirm APS but the haematologist said that could be as a result of taking the warfarin. The treatment for VST is the same as for APS so I’ve stayed on the warfarin. Definitely ask questions because you need to know for your own peace of mind. The longest I’ve been off warfarin was 4 days for an operation but I was given heparin to take me over that period. If they are reassessing it could be to determine how much of the new drug you need. It’s not a straight forward swap as they work differently but you shouldn’t be left without medication. I find doctors assume you know what they are thinking sometimes instead of taking time to explain.
I'm allergic to heparin( or an ingredient in heparin, ) but successfully enjoyed bridging for surgery with clexane. I enjoyed being able to eat liver and onions for a few days!
As one ages it becomes more likely that one will bruise or bleed more easily, which makes warfarin more problematic. And indeed, over the past year or so minor kitchen cuts -like a tiny slice on the edge of an opened can -- ( yesterday) take much longer to heal, despite the cotton under the band aid. In the past, even large cuts and scrapes rarely caused much of a bleeding problem. When I was a kid I interpreted my tendency to not bleed after a cut or scrape as evidence that I was the toughest kid around! Maybe I really have progressed out of APzs.
But I remain on warfarin. My INR stays around 2.5, but again, I have been symptom free as low as 1.7.
I emailed st T's to say I wasn't happy with the plan. Thrombosis nurse called me and we had a very long discussion. A doctor should have called me beforehand, I shouldn't just have been told they were bridging me off warfarin to retest without a proper explanation. He said he wasn't aware of anyone being taken totally off blood thinners and totally discharged.
A doctor is going to call me.
Fusch hey, Why did you start on hydroxychloroquine Years after APS diagnosis ?
Hi all. I am at st t's now and not very happy. Stopped warfarin on Thursday and been injecting fragmin (held this morning)Feeling exhausted, can hardly get out of bed, constant headache. Aching all over.
Saw a dr I have never seen before, who didn't know anything about me. I explained my history and why not happy to come off warfarin unless a good case is made. Had the blood taken. It really hurt, the nurse was really heavy handed. Something like 10 little bottles and I was virtually in tears. I have never even flinched at a blood test before.
So I am sitting here feeling horrid. Have an appointment in the pain clinic at 2 for nerve blocks re headaches.
I’ve just seen you’ve had a tough day, I’m so sorry and this sort of thing really shouldn’t happen.
I’m a patient at UCLH and despite being on warfarin they can test for LA using a Taipan/Ecarin venom time test. From the searches I’ve done (as an interested individual, not in any way a medic or specialist) this is a very unusual, but reasonably accurate test for LA which can be used when on warfarin.
I’m so sorry I didn’t reply earlier to give this info, hope it’s of help to others.
On the bad test experience, this only serves to add to your upset. I find it an incredibly variable experience. I’m a difficult stick and have known them ending up calling an anaesthetist or going in my foot (really not fun). Other times, first go. I always try to tell the phlebotomist where the best vein is - goes best when they listen.
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