Scared I may be taken off warafin

[charlie007]

I had a TIA 18years ago,prior to this I had problems with vision during pregnancy and was put on warafin.Change of doctors and they are saying TIA was migraine as I have bad migraines.My APA has been negative .I have said to the doctor this can happen when on warafin but withdraw the warafin and it goes back go positive.If I am right is there information in print I can hand to the doctor.As this has been going on for the last 9months and I am very stressed by the Irish healthcare system.

[MaryF Administrator]

When you are tested are all three tests being done? These are the three tests,

Anticardiolipin antibodies (aCL)

Lupus anticoagulant (LA)

Anti-beta2-glycoprotein-1 (anti-B2GP1)

They should be done at the hospital if possible as the samples taken are time sensitive. Be really firm, about your medication, if this is helping you. Make sure you take somebody you trust along to any appointment you have. Make it clear that you stand by the original diagnosis you were given, and should your medication be stopped, and you experience serious symptoms you will hold them directly responsible. Test results come and go, mine do and any of us have that problem. MaryF

[NeeNaw]

If taken off warfarin and you think that you need a blood thinner or would be happier on a blood thinner, you can buy Aspirin 300mg and you can take 1 a day of that in place of the warfarin - most doctors would be aware of the effects of warfarin and the long term effects, sometimes we have to let go of our comfort blankets and trust the medical profession now and again. I have taken several TIA's and a major stroke but I am adamant that I do not want to be on warfarin as I feel that the side effects would far outweigh the benefits for me at the moment - try to discuss the situation with the doctor, tell him that you feel stressed at the thought of coming off the warfarin and is there anything that he/she could do to reassure you with perhaps more monitoring until they are sure that warfarin is not needed just for your peace of mind

[Lure2 in reply to NeeNaw]

Hi NeeNaw,

Aspirin is not a bloodthinner but an antiplate-drug and works quite different to Warfarin.

I started with a baby-Aspirin but got worse and had to have Warfarin. Never do the other way!

There are no sideeffects of Warfarin if you keep the INR in the right therapeutic range. I myself waited a long time before I understood that I had to take Warfarin as I saw it as a "rat-poisson" - but with my thick blood (that is sticky blood) it was my life-saver and helped me to get rid of the neurolgical symptoms. Most of us need an INR over 3.5 to get out of symptoms.

Some here have LMW Heparin instead of Warfarin and do not need to take INRs and can eat whatever they like. LMW Heparin is taken in shots and once day and is like Warfarin an anticoagulation drug.

We have all too thick blood that has to be thinned and we have it for life!

Best wishes from Kerstin in Stockholm

[NeeNaw in reply to Lure2]

I have been taking Aspirin since my strokes and it works well for me - Dr Hughes has even advocated that Aspirin daily does help with "sticky blood" (Hughes Syndrome)

[Lure2 in reply to NeeNaw]

If and when you still get symptoms from APS on baby-Aspirin you need something heavier like an anticoagulant drug. That is what prof Hughes has advocated.

It is very good that you do not have any symptoms and do not need anticoagulation but I hope you have an APS-Specialist who you can discuss these issues with if you get worse.

I also suggest you read "Sticky Blood Explained" by Kay Thackray.

Kerstin

[MaryF Administrator in reply to NeeNaw]

I would not describe Warfarin as a comfort blanket! Many of us can trust our medical professionals but some can't as they simply do not have up to date detail and training with this disease! MaryF

[charlie007 in reply to NeeNaw]

I lost my vision when I was pregnant,I could only see shadows this kept coming and going .I went on to be diagnoses with a TIA and I just feel their is little or no communication between consultants.The consultant that prescribed it to begin with has not been contacted for his input ,he continues to work in the hospital but does mainly private work.I dont want to risk a major stroke.

[NeeNaw in reply to charlie007]

sadly I have found these last few years despite advances in technology, GP's either don't look at consultants letters or they are just happy to offload some of their heavy workload onto to care of the consultants - either way it is not an ideal situation for us as patients who suffer from a chronic illness. I remember back about 10 years ago my consultant telling me not to take all in that I read on the net, he has since retired and his post is now a job share between 2 female doctors and it must be about 8 months since I was last seen at the lupus clinic, whereas my previous consultant saw me every 3 months and I now find that I am resorting more and more to internet searches. I rang for an appointment with my GP and there was none available for 7 weeks ...... 7 full weeks ..... well when I did get to see my GP I had to be referred to the hospital and red flagged, 6 days from my GP appointment I was seen by the consultant had a procedure and am now waiting for another scan this month (not lupus related) - all 3 hospital procedures will have taken place inside the 7 week wait that I had to endure just to see my GP. It seems that health services are plummeting the world over, my first port of call ..... the GP is at best a 6 week waiting time and my feeling of my care now is ..... oh well!!! Due to Trust procedures, our practice has appointed a Pharmacist who constantly tweaks my meds, and I am sick sore and tired of having to argue with this guy that the consultant put me on the meds, the GP's are prescribing them and what gives him the right to try to take me off them. He seems to folow trust procedure without looking at any of the notes on file. I have had major delays in receiving meds and as a result I have had to resort to other meds that I can buy OTC and this is not an ideal situation for anyone, let alone someone who suffers from a chronic condition. Whilst I feel your pain I know only too well the stress involved in trying to get the current medical profession to care, perhaps I came across as nonchalant in my post but in actual fact I am in defeatist mode. To fight to get them to care, or even take an interest has taken its toll on me and caused me to flare - my hair is falling out in handfuls again but I haven't even attempted to speak to anyone about this as I know that they don't care one iota (or at least feels that way to me) . To those who have a good caring system in place, well done - between retirements and shake ups in the system my care currently sucks and I suppose I have resorted to caring for myself and trying to make the best of a bad situation.

Argue your case as others have stated and I wish you luck - but look for a back up just in case. Warm lupie wishes

[Ozchick in reply to NeeNaw]

7 weeks to see a GP????? :0 I can generally get in same day or next day at most.

[NeeNaw in reply to Ozchick]

6 weeks would be an average wait, I could see a locum in about 3 weeks but they will not do anything for you especially if you have a chronic illness and sadly although lupus has gained more attention newly graduated doctors still know very little about it

[Lure2 in reply to NeeNaw]

Have you ever seen a Specialist of autoimmun illnesses and been tested also for APS not only Lupus (SLE)?

I guess you know that Lupus Anticoagulant is an antibody for APS and is not Lupus (the autoimmun illness).

We know most of us how hopeless it is to fight undunderstanding Doctors. Can even give you a depression and a wish to forget everything and give up on yourself which you must never do.

I had a "fight" for almost 10 years before I got a Specialist who believed in me. I have microemboli that you do not see on a Scan of today.

Kerstin

[LWDP in reply to Lure2]

If they cannot be seen on a scan, how do you know you have microemboli? I'm really frustrated with the medical system at the moment. After living with and taking warfarin for 7 years because of diagnosed APL syndrome, my new rheumatologist referred me to a hematologist who spent 20 minutes trying to convince me that my neurological symptoms are not the result of APL because APL only affects blood clotting. So now I have to go back to the rheumo for a third visit to see if they can "diagnose" me with something else causing the bulk of my symptoms.

[Lure2 in reply to LWDP]

A Specialist of Balance- and inner/middle-ear issues said it was microemboli I had when I had to hold on a tree not to fall and I had a feeling that I was going to be thrown to the left and on the ground etc etc.

I have today Pulmonary Hypertension which I must have got by PEs.

I am primary APS with high titres of all the three antibodies since several years.

We know today that it is not uncommon with micro-clots when you have APS and they are not all seen on a Scan because they are too tiny. You know it from your symptoms, antibodies and from the bad result of the symptoms going on without treatment. It is possible there are other ways but if you meet a Doctor who knows APS he knows these things.

Read "Sticky Blood Explained" by Kay Thackray and read about different symptoms.

Best wishes from Kerstin in Stockholm

[Yllek]

I would certainly be very stressed as well. Do you have a Dr who understands Hughes Syndrome and the fluctuation of antibodies? Also a lot of us require higher INR than standard to stop debilitating symptoms like migraine if you are still getting them. I'm not sure if the pinned post of recommended Drs has any in Ireland but it would be my priority to ensure the Dr knows about Hughes.

Warfarin is a life saver to many of us and withdrawing it can have devastating consequences.

I've only just got up so haven't got any info to hand but I will look to see if I can find anything on my uni website where I have access to good medical journals which may be a good source of info for you.

Also my own APS Dr in Liverpool told me personally last week in clinic that the antibodies come and go and are affected by warfarin ingestion but there's no doubt about my diagnosis - she has retested anyway but will ignore any negative tests.

Kelly x

[terrim]

Don't give up. I've had the same experiance. APS Support UK have leaflets etc specially designed for medical persons who have little knowledge of APS. I've been lucky in that my GP supports me in that once diagnosed you have this for life in spite of experts saying it's doubtful because Im in the low to medium range. Results can go in and out of positive and negative. You are the important person here.

You haven't said when your tests were done for diagnosis but I would challenge the doctor based on the fact you have had the diagnosis. The new tests are very good should he suggest a review. Warfarin is not a comfort blanket it is essential for some of us my consultant told me I had to take it for life. Unfortunately they can't do the LA test if you are on Warfarin but 2/3 should still confirm your diagnosis. If not keep going until you get someone who is prepared to listen.

[charlie007 in reply to terrim]

I was diagnosed 18 years ago,I lost the power on my left side a spect scan was done and neurological tests and confirmed the diagnosis,but the scan has been lost .

[terrim in reply to charlie007]

The loss of the scan is not your fault you know the results of that scan and I'm afraid need to be very strong and challenge this doctor if he suggests taking you off warfarin. Ask for another opinion before any changes are made.

I'm on warfarin because I had a Venus sinus thrombosis after 4 years of diagnosis of APS and no treatment. This year I had the tests redone because the APS specialist felt my diagnosis of APS wasn't a secure one- he is of the opinion that it can go away BUT those on this site will tell you once you have it you always have it. Unfortunately my test results were very low and the specialist discharged me. If you have been on warfarin for this length of time you are obviously managing well. Warfarin is the most common treatment and costs the NHS very little by comparison to other medication. I would ask your doctor to put in writing to you his reasons for changing treatment and your objections. It may make him rethink his position. You have the right to question the treatment and have another opinion. In this case I would ask for a referral to a top APS specialist.

[GinaD]

I did an experiment, prompted by blood work that had turned negative, and lowering my INR. Turns out my original diagnosis was postponed because I had brushed off, or hidden from myself, the symptoms of mini strokes and called them "panic attacks." When the panic attacks got bad enough to prompt ER visits and MRIs, turns out they were not panic attacks or even TIAs but full-blown mini strokes.

But when my INR went south of 1.7, I got another panic attack. Except this time I knew what it really was. So, looking at my case, this is a disease that does not go away even if bloodwork my fluctuate.

The possible side effects for warfarin are indeed dire for people with normal blood who take warfarin because they have a sticky spot in their circulatory system – such as an artificial heart valve.

But don't compare apples to oranges. Hughes syndrome patients take warfarin because we have sticky blood syndrome – the entire circulatory system is affected. And yes, getting used to the restrictive diet is annoying. But not as annoying as having DVTs, TIAs or heart attacks.

[Wittycjt]

Go to the Hughes info page look for their educational print outs. I posted this info awhile ago check my posts. Hope this helps. Post in the above right hand corner search box.