Sticky Blood-Hughes Syndrome Support

fed up with low inr

I thought I was really getting somewhere after three stable months and now thanks to the food poisoning episode I am all over the place again. Last Friday it was back to normal and I felt great, but have had a three day headache (which I thought was due to my neck) but was due to re-test today and it has gone too low again. I went on a walk today but it was too hot so now have a thumping head and feel totally exhausted and wondering how I am going to get through the rest of the day. Don't like to lie down if I have a headache as it makes it worse but at the same time can't do much when I have one!

At times like this I feel so fed up as I now realise that any of my usual activities have gone out of the window for the rest of the week. Just hope the nurse can get me on a dosage to gey my inr up quickly.

Hughes is a realy bugbear!


5 Replies

no what you mean hun...mine too :(

I had said to the nurse that it needs to be higher & she agreed but because the com'said to keep taking the same amount of warfari se would'nt up them :(

I did consider to just take more anyway.....but I thought I had better not as I seem to upset docs quite easy if I think for myself!!....but its me thats suffering as I am sooo slow with thinking & keeping up with stuff :(

I might try zumba tomorrow...but I dont hink I can think quick enough still to keep up! & thats the slow moves!!!

Hope you sort yourself out soon, keep your chin up & good luck xx


I understand the dilemma both of you face. I face it too and I self medicate and self test.

I am lucky Prof Hughes set my inr at 3.5-4.0 and recommended I get my own machine. I am on my second now. I have been self testing since 2004 and would definatetly recommend it it. Sometimes Roche have a half price offer on the machine and when I bought my first one I paid in interest free installments.

My GP is good about me getting the strips and allows me to choose my dose of warfarin which is good because since I hit peri menopause my inr has been all over the place.

I have fragmin injections which I can use if it falls below 3 which it does often now, do you ladies have fragmin to use. It does help as it starts to thin the blood within a few hours allowing the warfarin to catch up. I also use smelling salts which are a very old remedy and they give very short term relief from the dreadful headache I also use 4head stick on my head as the cooling helps distract from the pain.


I feel foolish because i am really just learning about hughes my INR is a 1. i have an appt with a rheum. on friday. I want to b able to manage this better but there doesnt seem to b much awareness on hughes here in the US. Does anyone live in the New York area on this site by any chance? id love to hear from you.


I think (hope) that at last my inr is coming back up. It has not helped that I have had a horrible virus as well which has not helped the brain fog. I have slowed almost to a dead halt. I started cutting down on going out two weeks ago when I scraped my car bumper, Was going to go swimming today but found I had left my prescription goggles at the pool same day as I pranged the car. So that was an expensive day! New goggles are too expensive so have opted for a cheap pair of glasses to wear instead.

It is all so tedious. But comforting to have this forum to make me feel I haven't lost the place yet. (My90 yr old mum has alzheimers and my cousin died from it at 61 so that doesn't help)



Hi Caroline

I am really sorry to hear about your cousin and mum we all think that we cannot take much more and it always feels like things are ontop of us and then are INR plays up and we feel even worse well i cannot get rid of all the issues but we canlend an ear or an eye and help when we can .

Just keep going things do get better i promise.



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