Unstable INR

[Gerardina]

I'm 44 and was diagnosed with APS in July this year. I have been on warfarin and hydroxy chloroquine for a connective tissue disorder since then. However, my INR is not stable, it gets up to 2.2 for a week or two then drops to 1.7. My dose has steadily risen to 7/6mg alt days. Is this normal? I'm worried my dose will have to keep going up, does this happen a lot?

[Manofmendip]

Hello and welcome.

Warfarin is metabolised differently by people and it is not the dose that is important it is keeping your INR in your target range, regardless of what dose it takes to do that.

Often patients with APS need an INR above 3.5 to have effective symptom control.

Where are you from?

Who is managing your APS/INR?

Best wishes and regards.

Dave

[jojo-lianne]

Hi Gerardina,

Welcome to the forum!

When I was initially diagnosed, my INR was constantly unstable. My dosage went from 3mg up as high as 24mg then eventually settled around 10mg.

A lot of things can have an impact on it. for example; your diet, how well hydrated you are, whether you have an infection, how much exercise you've done in the past week and even the temperature. Mine screws up every time I fly too.

With a fair bit of trial and error you should get there eventually. If you're worried or unhappy about being tied to the INR clinic then you can always talk to your APS consultant or your GP and discuss whether heparin (Clexane or Fragmin) would be better for you.

I hope that helps, hang in there!

Xx

[Gerardina in reply to jojo-lianne]

Thank you that helps a lot, had no info about APS from hosp when diagnosed!

Xx

[Gerardina]

Thank you all for your replies. I live in Southend, and while our anticoagulation clinic is good, the haematologilot I was referred to put me straight on warfarin and dischared me with no information about the disorder. I asked about the coag-u-check machines, but my hospital won't supply or train patients to use them, so it's weekly visits to hosp for blood tests which is a bit of pain when I work in a primary school!

On the plus side, my migraines are much better, although the fatigue hasn't improved much.

I didn't realise warfarin is so sensitive to everything! I've been keeping an eye on my vit k intake, but have had colds with working in a school which has probably affected my INR.

It's so good to be able to talk about this to people who have it! None if my friends have heard of it or my GP. He put my migraines and fatigue down to ME for the last 10 years!

Gerardina xx

[Gerardina]

My GP didn't know what APS when I got my blood tests back from the hosp he had to look it up! How do I find a specialist in my area?

Many thanks x

[Manofmendip in reply to Gerardina]

Hi Geradina

Please have a look at the following link, from which you will be able to locate an APS specialist in your area.

hughes-syndrome.org/self-he...

You really do need to be under the care of an APS knowledgeable consultant.

Best wishes.

Dave

[meldav73 in reply to Gerardina]

I know the feeling - just last week my GP sat and GOGGLED it in front of me !!! Then sat there reading for a good 5 minutes, then turned to me and said ''i think i have to refer you to a Haematologist'' M xx

[Lure2 in reply to meldav73]

I have answered your other question!

Do not go to that GP but look at the site I suggested 5 minutes ago!

You are not alone with these doctors that do not understand. Many in the same situation.

Kerstin

[jojo-lianne]

Unfortunately not many in the medical profession are up to date on APS. It's still a relatively 'new' condition having only been properly described by Professor Hughes in the past 25 years.

There is a list of expert consultants/specialists on the Hughes Syndrome website. In fact the whole site is a goldmine of information hughes-syndrome.org

There are loads of names which refer to the condition; APS, Hughes Syndrome, antiphospholipid antibody syndrome, sticky blood syndrome and the 'affectionate' nickname from many sufferers... sludge blood!

It's well worth checking the GP surgeries in your catchment area as well. Some offer INR clinics on site whilst others are reliant on the local hospital for their anticoagulation patients. See if there is another one you could register with that is able to offer you this service rather than the hospital. There is a fantastic section on the NHS website where you can compare ratings and services for surgeries on your local area: nhs.uk/Service-Search/GP/Lo...

If nothing else it might make it a bit easier to fit in around work!

[Gerardina in reply to jojo-lianne]

Thank you, will definitely try those websites. If I can find a local gp surgery to do blood tests that would be fantastic x

[Lure2]

As so many good things have been said already I only want to inform you that very good books are available for sale about APS on Hughes Syndrome Foundation Charity website.

I prefer "Sticky Blood Explained" by Kay Thackray. She has APS herself and she writes about all the symtoms of Hughes Syndrome (APS or Sticky Blood). It is a very good book also for relatives to understand how we feel.

Best wishes from Kerstin in Stockholm

[Hidden]

Possibly, you should be on low molecular weight heparin rather than warfarin.

[jetjetjet]

I was dia. in Sept. 2009 and my INR has never been stable some times going from a 2.4 on Monday to a 9.1 on Thursday --just had another bad bout with it plummeting and had to go on Enox again the second time in 3 months ????

[Lure2 in reply to jetjetjet]

What have the doctors said about your very instable INRs? Have they suggested some other form of anticoagulation?

Do you have the best APS-doctors? You should have that!

Kerstin

[Gerardina in reply to Lure2]

I'm not actually under a doctor, when I go to the anticoagulation clinic at my local hospital I have my blood test done then see the pharmacist if my dose needs to be changed. The pharmacist doesn't seem worried today when I saw her, she said it's quite normal for my INR levels to be very up and down. I have to go for hosp blood tests every two weeks if result ok or every week when it isn't. Bit concerned that it's not actually monitored by a doctor, but that seems to be how it's done here!

[Gerardina in reply to Lure2]

I'm not actually under a doctor, when I go to the anticoagulation clinic at my local hospital I have my blood test done then see the pharmacist if my dose needs to be changed. The pharmacist doesn't seem worried today when I saw her, she said it's quite normal for my INR levels to be very up and down. I have to go for hosp blood tests every two weeks if result ok or every week when it isn't. Bit concerned that it's not actually monitored by a doctor, but that seems to be how it's done here!

[Herb in reply to Gerardina]

Its the way its done here too in Newcastle, my APS doctor said she is happy the INR clinic and haematologists know a lot about warfarin and probably more than she does. However the therapeutic range is decided on by her team and if anything needs changing she puts it in writing and sends a copy to me and my GP.

[Herb in reply to Gerardina]

The doctor who originally diagnosed your APS and the GP would normally the doctors that you are "actually under".

No patient would be on warfarin without some degree of medical supervision, and if you feel the supervision is not sufficient or frequent enough you should in the first instance talk to your GP about it that.

The doctor who initially diagnosed your APS should be able to look at your anticoagulant record book to see how your INR clinic is getting on with you. Take the record books along to your appointment and make them look. Anticoagulant clinics tend not to understand APS and work in fear of their patients having a bleed, so you need to make sure that your organise some sort of paper trail between you, the clinic, the GP and the doctor who diagnosed your APS.

[Gerardina in reply to Herb]

It was my neurologist who organised my APS blood tests following a spell in the stroke unit with bells palsy in feb this year. Once it was diagnosed he discharged me and I saw a haematologist in june who put me on warfarin. I only saw the haematologist once and he discharged me once I started the anticoag clinic in July. This clinic is run by pharmacists and I have to have a gp referral to see the haemo again! All very long winded. ...gp not very knowledgeable either

[Herb in reply to Gerardina]

if you want, you can ask the GP to get referred back to the doctor in the stroke unit or the haematologist (whichever one you felt most comfortable with). You say you were discharged from the stroke unit and the haematologist but they will still have your medical records from when they saw you and should be able to see you again if there is a need. Being discharged just means that they didn't ask you to go back, for a follow up, not that they can't see you again.

[Herb]

Often people with APS have unstable INR.

However sometimes it can take a few months for it to settle down. Yo maybe have not yet found your perfect dose.

It is normal for the clinic to increase your dose if your INR is not in range.

Some people need venous samples (where the blood is taken from a vein and tested in a lab) a these are considered more reliable than the fingerprick test). The doctor who diagnosed your APS can advise on this.

In actual fact there is not a big difference between a result of 1.7 and a result of 2.2.

You should know what your target INR is, also what your therapeutic range is.

For example your target INR might be 2.5 and your range might be 2- 3.

This should be written in the front of your anticoagulant record book.

[Lure2]

Hi Gerardina,

The most important thing with APS is to be correct anticoagulated as we have too thick blood. That is why you have got warfarin.

You are not anticoagulated on an INR of 1.7 or 2.2.

It is obvious that your clinic and GP does not understand APS. An Hematologist who knows APS is in charge of my warfarin-treatment and I selftest and I am monitored also by a nurse at the anticoagulation clinic when I need help.

As said before; you must have an APS-doctor!

Kerstin

[Lure2]

Good idea from Herb that you can see your Heamatologist who put you on warfarin. He/she ought to take responsibility for your INR. He/she could refer you to an APS-doctor perhaps so you can avoid that GP you do not trust.

We have found that the Neurologists do not understand APS. Several of us here have had that experience.

Good luck and stay strong. It is difficult but when you get the right doctor you can feel safe.

Best wishes from Kerstin in Stockholm