what are INRs?

[sharon58]

I had a stoke or TIA, after some blood tests the stoke consultant thinks I have Hughes syndrome and I have to see a neurologist and have another blood test to confirm before he can put me on Wararfin? my question is what are INRs I see people talking about.

I do have lots of strange symptons that seem to come and go - is that normal?

I dont have a visible rash but a couple of weeks ago my skin feels like its on fire and other days I cant stop iching - is that normal?

[Lesley_D]

Hi Sharon,

I can't answer all your questions, but here goes my take on them.

Warfarin is to thin your blood down to prevent further blood clots. INR is the measurement they use to measure how thin your blood is, for most folk not on warfarin it would be 1. if you have a stroke or need warfarin, the aim of the doctors is to thin your blood down and like for me.... the aim is for my INR to be between 2.5 and 3.5 but nearer the 3.5. This means my blood would be 3.5 times thinner than normal blood.

Strange symptoms..... Well I have had fatigue, my eyesight going funny for 30 odd years, I have suffered multiple miscarriages 30 years ago, but it was following a DVT and PE and continuing problems with my breathing that APS or Hughes was diagnosed last year. The rash you talk about, I wonder if that may be something to do with lupus, but not sure, as for sking on fire, or itching sorry I have no reference for that.

Hope this goes someway to helping you.

Good luck and hope all is well for you.

Lesley

[sharon58 in reply to Lesley_D]

thanks for you prompt reply Lesley.

[Lesley_D]

Your welcome hope your ok

[paddyandlin]

Hi Sharon

Welcome to the group

I hope i answwer all your questions

what is INR?

INR (International normalized ratio) is a blood test which refers to the thickness of the blood on Warfarin treatment. This test compares the tendency for the patient's blood to clot against a standard blood result.

A ratio of “1” is ‘normal’

A ratio of “2” is ‘half’ thick

A ratio of “3” is ‘third’ thick – and so on

Patients with Hughes Syndrome and severe clotting problems such as stroke usually need an INR of around 3.

I do have lots of strange symptons that seem to come and go - is that normal?

What you may class as strange would be normal for us , is it things like joint pain, memeory issues, tell us what is strange and will compare notes lol

I dont have a visible rash

you do not have to have a rash to have Hughes Syndrome but people do talk about itich skin etc who have hughes

hope this helps

paddy

[daisy11]

I find that when my INR IS below say 4.0 I experience this sort of tightness and heat in my head - its strange. I have just been told that I have cataraccts due to doses of prednisolone steroid and this was only found out by Boots the Opticians, I found that my eyes have begun to feel so dry ( I also have Dry Eyes syndrome) but they are so dry, and also noticed that I cannot really focus on newspapers even though I have glasses. She said that they are like a person over 65 and I am only 46. I was worried incase it was bleeding causing the vision as that of my TIA.

Hope you get all of the info, because this site is brilliant.

[Manofmendip]

Hi Sharon and welcome.

I can't add much to what has been said by the others.

Prof Hughes advised me to keep my INR (International Normalised Ratio) around 4. This used to keep me reasonably symptom free but I still had TIAs and a bad clot in my right hip and another in my bowel and sometime in 2010/2011 a small, silent stroke.

I've been getting a loot of funny turns affecting my balance, making my head dull and my limbs shaky and weak. My GP and I suspect that something is affecting the labyrinth mechanism and/or the brain stem but my Neurologist is not being very helpful and tells me they are a type of migraine; but they don't respond to migraine drugs! I'm seeing Prof Hughes again on 15th February, so I hope he will be able to advise.

So, strange symtoms are a common thing for all of us APS patients it seems.

Best wishes.

Dave

[gingersmum in reply to Manofmendip]

Hi Dave

professor Hughes am sure will be able to find an answer for you.

Wishing you well.

Indeed we do have strange symptoms, so glad to see that am not alone with these

[sharon58]

Thank you to all who replied, it has been very helpfull, when I went to my doctors yesterday and mentioned 'Hughes syndrome' I was surprised that she had never heard of it!!!

I feel I cannot go back to work yet because of all my strange symtons which include-

migraines

memory loss

very dry mouth

confusion when speaking-missing words

very tied

weak and achky all over my body

bloated stomach and cramps.

Im so glad I found this web site and be able to talk to other people about it, I will let you know what happens with the tests I have in the next few weeks.

Once again thank you all very much.

Sharon.

[Storky]

Hi Sharon

I have just been dx with Hughes and Sjogrens Syndrome by prof Hughes. I am seronegative which means that when they take the blood to test for the antibodies I don't have them. There are some of us that don't but are still dx with it because we have all the clinical symptoms like miscarriages, headaches, cognitive problems, memory issues, PE and in my case stroke etc.

I also have got Sjogrens which causes dry mouth, eyes and skin and also pain in the joints and fatigue. I also have other medical conditions which I won't bore you with. The point is that I too get itchy skin and that is sometimes due to the dryness. Its possible that you may also have Sjogrens which would explain some of your symptoms and is quite common to run along side Hughes (APS) but I am sure they will look for that when assessing you. If so they may put you on a medication called Plaquenil which may help with many of those symptoms. I and many of the people on here are on that medication and although I can't say if it is helping me yet as I have only just started taking it, many here swear by it.

Hope that helps and you get answers soon.

[sharon58 in reply to Storky]

thank you very much for your reply.

[Manofmendip]

Hi Sharon and everyone.

I can tick every one of the symptoms on your list and I have APS and Sjogrens.

What I want to know is why for the last 5 months I've had bad symptoms again, almost as if I'm not on the meds?

Prof Hughes will be good, I'm sure, has has been in the past.

Best wishes and love to all.

Dave

[tim47]

Hi Sharon. First the good news, I've had what is now known as Hughes or APS for about 40 years and I'm still around and enjoying life because life can go on with this disease. I have many of your symptoms but not all. Until Prof Hughes put all the weird and wonderful symptoms together I, and perhaps a few doctors, thought I was something of a hypochondriac. Since I discovered the Hughes Syndrome Foundation I've realised all my symptoms are classics for Hughes and Sjogrens (never can spell that one) I remember Prof Hughes, in an answer to a question about what Hughes can affect, replied anywhere where you find blood in the body. One of the biggest problems is getting doctors to understand Hughes- so tell them about this site. (There used to be a Prof Hughes Blog but anyone know how to find it now? It was a great thing to point some doctors towards)

Best wishes

[paddyandlin in reply to tim47]

Hi Tim

welcome to the group and Prof Hughes Blogs will be addaed to the site but you can see them on hughes-syndrome.org

paddy

[Herb]

"my question is what are INRs I see people talking about. "

INR stands for International (because it is used worldwide) Normalised (because scientists have standardised the test so there is no variation in the way it is measured)

Ratio is a comparison between the time it takes the blood of someone on warfarin to clot compared with the time it takes of a Normal standard( a healthy person not on warfarin).

Your doctors decide what your INR is to be. It is based on your symptoms. Sometimes people begin with a INR 2.5 to 3.5 and have it increased if symptoms don't improve.