out of target symptoms

[kathyD64]

Hi my name is Kath I’ve had APS dx 1990 on long term warfarin since 24 when I nearly died due to recurrent clots on the brain. My target INR is 3.5. I have a history of serious clotting on low Inr ( TIA in aorta ) in my late 40’s when my condition flared with menopause & after flu virus so since then I test my own inrs plus regular venous checks.

Sorry for long intro but my question is does anyone know if there is any published evidence with the symptoms associated when Inr below target? I was told by a consultant fatigue is not one of them but currently recovering from Inr 2.6 that’s prompted this question as I find I can be still symptomatic for about 5 days even when Inr at target does anyone else find that? fatigue muscle aches increases, amongst foggy brain headaches eye aches xx my eyes especially seem to get symptoms with both high and low inrs but not sure if that is something others experience? I be very interested in hearing about your experiences kath xx

[Star13]

Hi Kath - Are you by any chance on Hydroxychloroquine?

Im not on warfarin but do suffer from eye aches especially if I'm coming down with something.

[kathyD64 in reply to Star13]

Hi yes I am 400mg x

[Jillymo]

Hello long time since I have seen you !

I have had a stroke as well as TIAs and also have small vessel issues with regard my brain. I also have an enlarged Aorta so now under a cardiologist in Bath - we both know Bath very well.

I would have thought lack of oxigen to our brains would cause brainfog plus lethargy and small micro clots could affect the eyes. If our blood is not circulating as it should and yours clearly isn't if your INR is low then surely this would cause an array of issues.

Have you had your Folate and B12 checked ? Both of these can cause similar issues if not addressed especially if your on PPIs.

Nice to see you. 😘

[kathyD64 in reply to Jillymo]

hello sorry to hear about your health.. indeed we do know Bath so well..

I saw my GP am as my Inr in target but I’m feeling unsteady nausea since migraine currently in hospital awaiting a scan just to air on the side of caution just had bloods ecg. So reassuring they are being so thorough as I was expecting to see GP and go home rest and see how I was. X

[Jillymo in reply to kathyD64]

Sorry to hear that but lets hope they get to the bottom of what is taking place. Please do let me know their findings.

I do hope you get somesort of result as this is now getting very wearing.

Keep your chin up. 💐 🍇🍏 🍌 - 😘

[MaryF Administrator]

Hi, Many on here report dire symptoms, if their INR is not up to scratch, certainly if you B12, folate ferritin, VIt D or Thyroid function is low that will add additional problems with fatigue and pain, and not unusual to have those complications on top. MaryF

[Lure2]

Hi, I see that Manofmendip (Dave, Admin here some years ago) have talked to you about an Oftalmologist he saw about his eyes. That Specialist knew that his TIAs or eyesymptoms was caused by APS. I myself had Amaurosis fugax and that symptom helped at once with Warfarin.

I think you keep your INR a bit too low at an INR of 3.5 perhaps. You told us some years ago you had a therapeutic range between 3.5-4.0.

I wonder if you are LA positive and triple positive? I hope you have a Specialist today!

If you have a Specialist he or she should know that it is important that we keep free from clots etc. If he understands APS and you tell him about your symptoms he should try you on a higher level of INR. Many Specialists know, that only WE know when we get a too low INR, besides a stroke or PE etc but then it is too late I should say.

Prof Hughes who is the one who knows APS best, usually tried the patient on a low dose of LMW Heparin for a couple of weeks, too see it the symptoms eased or disappeared. If so he put the patient on Warfarin.

Good Luck to get free from your symptoms. Hope this helped you a little.

[user666]

are you on an antiplatelet? Today’s standard protocol for arterial clots is to start with an INR of 2-3 with the addition of an anti platelet, low dose aspirin or plavix after first incident then to increase INR if a break through clot occurs. Warfarin is better at preventing venous clotting whilst antiplatelet therapy works well for arterial non a fib clotting.

Warfarin has yet to be proven to eliminate any symptoms other than clotting in studies that are not just anecdotal( case studies) and many studies support that a high INR(above 3) has very little benefit than moderate dose warfarin( INR 2-3) and a lot more risks.

[kathyD64 in reply to user666]

I am on warfarin with a target Inr 3.5. Aspirin was added years ago but did not suit me. I can only speak from experience and having an Inr at 3.5 or higher keeps me safe from both venous and arterial clots which only occurred when so called specialist at another Trust said my Inr target should be 2-2.5. I think the patient knows there body best and waiting just in case breakthrough clots occur is very dangerous so regardless of these studies decisions need to be based on individuals and some research and experts would dispute this. Prevention is better than cure and education is essential. I have over 45 years of experience living with APS I can draw on from childhood experiences and 35 years of being on warfarin. The consultant haematologist & neurologist that saved my life at 24 when APS was only just described had my case study published in 1991 BMJ. I then had target 3.5-4 told never to stop taking warfarin but titrate dose sadly future doctors were saying what you are saying above and that’s when I landed in heaps of problems from arterial clots so I disagree!

[user666 in reply to kathyD64]

As to you question on studies to show your GP, ironically contrary to this group, more people complain of warfarin causing fatigue and many studies were run showing it has no effect on fatigue one way or the other. The complaints of fatigue were likely a nocebo effect and the feeling of improvements are thought to be placebo but our mind does effect our body so a placebo effect is real and beneficial in my opinion.

[kathyD64 in reply to user666]

I just wondered if you have APS and if so what treatment are you on? With the study re warfarin and the contradiction to what most people report about fatigue and the benefits of having a higher Inr to control symptoms what was the study participants on warfarin for in the above studies?

[user666 in reply to kathyD64]

yes I have Arterial TAPS and on the present approved international protocol for treating it after first clot with HCQ, low dose aspirin, INR 2-3 and a statin. Since 2005 most doctors today prefer not to use high intensity warfarin for it shows zero benefit over moderate intensity for the majority of TAPS patients. Bringing studies about warfarin and fatigue or brain fog or migraine to your GP will only likely support his argument not yours for he is correct in that it has been shown in study after study to have no effect on fatigue or other symptoms. Professor Hughes used case studies not well run control studies.

[kathyD64 in reply to user666]

I know warfarin has certainly got its cons, such as maintaining therapeutic levels as the fluctuations can’t be doing our bodies any good! As I inject clexane if Inr below 2.7 I do feel immediate effect and I once did ask if I could switch to daily injections but it was suggested warfarin would be better and injecting every day had its own issues.. I am on HCQ as well which did make a big difference to my other symptoms such as dryness fatigue and reduced my ACL antibodies from 350 + to 80. I have beta2glu antibodies (can’t remember full name)! As you are aware from my post I am just getting over a very rough patch with my Inr has been below 3 for 5 days.still not well yesterday my venous Inr was 3. I boosted my warfarin last night by 2mg as per warfarin clinic advised and today I feel totally different! I been shopping walked the dog not needed pain killers I can climb the stairs with out such heavy weak feeling legs and my thinking and memory including word finding has improved I know without checking my Inr that I would imagine I am about 3.4 equivalent to venous today.. my correlation yesterday was 0.3 difference 3.3 CC Inr 3 I always find CC runs consistently slightly higher. Having not known anything different from warfarin all I can say is I’m willing to listen to new findings and recommendations as I’m sure the combination you described does make sense and I wish HCQ I started many years ago rather than having to battle for it.. but the most important thing is for any doctor to listen to the patient as being told you are wrong or your symptoms are due to fibro for example is so damaging and insulting when u know you are listening to your body and how you feel which is consistent. I had a trial of IM steroids my aches and pains vanished but the stigma of fibr remained for me until recently totally vindicated by GP despite knowing these findings and starting methotrexate 3 years ago certain GP still referred to this historic diagnosis made.. so I do WORRY that if they say this about warfarin not helping with fatigue and memory which many APS patients can swear it does help they will start pointing towards saying we are hypochondriac again which would totally unpick what I think is incredible work by Prof Hughes and his team.. I owe my life to him as without his research from 1983 that was cited in my paper and my positive ACL antibodies were only 8 and 12 second time I clotted ( venous sagital sinus sigmoid jugular bulb so not arterial) but recurrence happened within 7 days off warfarin so I owe my life to warfarin too..

[HollyHeski Administrator in reply to kathyD64]

Well said - I think your post has proved that we know our bodies and with the right APS specialist we can find the right combination and levels of treatment that work for our unique desease!

I read a lot of research papers and studies, I also undertake works as a public reviewer on research papers. None of us would be anywhere without these, But we do need to remind ourselves that illnesses and health conditions have various issues that not all 'one' treatment suits all.

[kathyD64 in reply to HollyHeski]

I totally agree, our personal stories and collective similarities with regards to APS symptoms is a valuable resource for the medical professionals with unique data! Sadly we face many barriers of some medical professions that are either unaware of ongoing research or pig headed to suggest they already know all they need to know about this evolving condition!

We can only continue to share our experiences, try to make logic out of it and educate.. this platform was an absolute lifesaver when I was being fobbed off and nearly pensioned off but here I learnt about St Thomas’s and I no longer felt isolated & alone in my journey that started in 1990 with outstanding care to then being treated as a hypochondriac.. my hopes are that sharing our good as well as traumatic experience we can support and prevent future APS sufferers having to endure the same negativity and trauma’s xx

[Lure2 in reply to user666]

Hi user 666,

I must say that I do not know what Arterial TAPS is as a matter of fact.

I think it may differ a bit from us with APS taking Warfarin as best choice recommended by our Hematologist or Specialist.

[Patientlyoptimistic]

I am I warfarin with a target range 3-4, which I had to fight for. If my INR is low, I feel tired, head achey and general rubbish for a while. The haematologist said it is nothing to do with my INR. I spoke to Prof D’Cruz who confirmed that low INR is known to cause those symptoms