INR

[missygirl0130]

When your INR is off, what type of symptoms do y'all have?

[MaryF Administrator]

A full range or symptoms can be felt by many from feeling generally unwell to loss of balance, vertigo, migraines, dizziness, loss of sensation, numbness etc etc. Important to check in with your doctor if you are feeling very ill, and to get your INR checked. MaryF

[Tucson]

NONE.

[KellyInTexas Administrator]

A good place to study a multide of APS symptoms and associated low INR values might be the newly launched website GHIC. world

Great info for your doctors-

[Yllek]

I always start with a strange rash that prickles on my palms (Drs said it livedo), my tongue goes numb and I get very bad hip pain.

I can’t think straight and find problems saying the right word and can get pains in my chest and headaches.

Overall feel crappy and this all starts when my inr reaches 3.3. Symptoms get more severe and worrying the lower my INR goes such as stumbling over and thunderclap headaches.

I hope you have a good Dr who understands the condition well.

[WendyWoo50]

When my INR is 4-4.5 (my top range) I know who I am! Yes, I still have a mild headache, I still ache and have limited mobility and energy but... When my INR is below 4 I start to ache more and my headache worsens. The lower it gets the worse I feel.

At 3.5 my hips and legs really ache deep inside and it feels like I have flu. Every step I take, every move I make it hurts! Often it feels like I've damaged my hands and wrists too. The headache worsens often I get thunderclap headaches (diagnosed by a neurologist) and micro-embolisms in my brain and it's harder to find the words I want to use.

I am exhausted all the time, yet can't sleep for more than an hour at a time for the pain. I try to keep mobile but only manage a few steps (often using crutches - which is difficult due to shoulder and wrist and hand pain).

Basically when my INR gets as low as 3.5 (sometimes this even happens at 3.7) I need to be totally looked after, fed, watered, everything (I don't bathe)

Under 3.3 I find it almost impossible to get out of bed.

I must really bug my heamotologist as I go on and on saying I must be 4-4.5 but my official range is 3.5-4.5 so they don't worry if I'm at 3.5. But they don't see my pain or my struggle. They don't see that under 4 I have no life!!! I take Clexane if I go as low as 3.0.

When I'm at 4 I have a bit of a life. When I'm under that I sometimes wonder why I'm on this earth - especially at night when I'm in agony or on a sunny day when I can hear others out having fun yet I've got the windows shut to close out the noise, the curtains shut to close out the brightness and I feel crap!

I hope this helps why not print these replies and take to your haematologist, rheumatologist, GP to understand why you need a higher range and to be in that range!

Good luck. Let us know how you get on 💋

[missygirl0130 in reply to WendyWoo50]

Thank you, this is very helpful.

[Lure2 in reply to WendyWoo50]

Wow .................., you really is depending on your blood being thin! I hope you can be able to selftest! The more I hear from different members here, the more I understand that APS is a strange illness.

I know I read that you also had those high Beta-2-glycoprotein1-antibodies (> 160) like I have had for the last 7 years as with the Cardiolipinantibodies. Also have microembolies and my clots are not seen on a Scan.

I also like when I am at 4.0 in INR (over 5.0 with the finger at home). A high INR the difference is greater.

[daisyd]

Too high for me is a feeling of drinking lots of caffeine anxious still have problems thinking as I usually do

Too low lack of energy, short breath, word muddle, confusion

That’s when I test my INR usually I am right .