INR HELL.....: Had my inr taken at 6.... - Hughes Syndrome A...

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INR HELL.....

loppylou68 profile image
11 Replies

Had my inr taken at 6.4 previously 5.6 but its scary how it rises....

recently had op and went through bridging protocol to get Inr to 1ish but just can't get it back-to-back 3-4 as advised.

While this has been occurring I have had all Aps symptoms in big doses....

How do I get inr to stabilise.....?! V scared with this whole situation

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loppylou68 profile image
loppylou68
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11 Replies
Ozchick profile image
Ozchick

It does take a few days for the change in dose to take effect and the dose you took before may not be the dose you need now. Some of the others on here that take Warfarin will probably be able to help you.

Hi,

This is happening to me right now. I was at 6.1 last week with horrible migraines and symptoms and then dropped to 2.1 now waiting to see what it is on Friday. I've recently had to be testing twice a week as it is so unstable. The migraines are extremely awful side effects and sudden tiredness from a lower INR. My body hasn't recovered from the height and the lowering of my INR. I've recently started new meds so am in the process of making sure it's not that etc.

All I am thinking is that I have gotten through everything else so hopefully in a week or so my body will be ok and I'll be back on track. I know I've just ranted but sometimes it's nice to nice it's normal - I have many a freak outs and worries this week and have use this platform to help me.

I hope it becomes stable for you shortly - good luck!

loppylou68 profile image
loppylou68 in reply to

Freak out sums it up lol

Can relate entirely

Thanks for your answer

Lure2 profile image
Lure2

You have recently have an operation and probably you have meds that you do not take every day and also you do not exercise as before operation. Exercise will lower your INR also green vegs and then you need more Warfarin. It is easier when you take the meds every day as INR is constancy in a lot of things. Do you have a possibility to selftest as that makes it easier for you to control and follow your INR.

Take tests more often during this time and also write everything down. Ask for a Fragminshot to take when the INR goes under the therapeutic range.

Hope that helps a Little. Good Luck!

Kerstin in Stockholm

loppylou68 profile image
loppylou68 in reply toLure2

I had the op in November and did bridging protocol down to 1.5 fragmin I'm addition to warfarin for 2 weeks.

I have been told by dietician not to have any green leafy vegetables at all. Previous dietician Said 2-3 portions a week was fine. So confused As to what to eat now

No possibility of self testing unless I win the lottery

I have fragmin in the wings if required when low.

I currently test weekly

Exercise is impossible when you feel like your dying

APS has caused dystonia and Chorea so all symptoms have worsened

I have since November been under a Nephrologist who had diagnosed renovascular disease and put me on 2 blood pressure tablets but again my levels were under control.

I had been in range until the end of December

So as I'm 6.3 should I just eat some greens?!

Not sure how much longer I can take of this

Thanks for your reply though it has helped

diane1428 profile image
diane1428

I do feel for you. My inr goes through the floor . I have weekly blood tests. They help.

Do you keep a record of food,mess each day.

I found I couldn't eat Asian food i.e. Curry, Chinese etc. makes my inr plummet to 0.5 terrifying.

Best of luck. You will get through it I'm sure

Regards Diane

Lure2 profile image
Lure2

This is difficult as one person says no greens and perhaps count the Warfarin-tablets according to that and another says 2 - 3 times a weeks.

You should know that green vegs will lower your INR and also when you do not exercise at all it will increase your INR in the long run. Then if you take different drugs different days etc it will make the INR go up and down.

It takes not so long time to lower the INR with 8 big brusselsprouts as to increase your INR with more Warfarin. My INR is lowered in 15 hours with greens but it takes 2 -3 days to increase the INR with Warfarin.

I dare not say you should do this as they calculate with something that I do not know but "in general" this is what happens for us with APS. We are ofcourse all of us different persons but most of us act like this. There are rules for when the INR increase or get down. Some drugs make it go up and some make it go down.

I do not know if you could get something out of this but it is good that they test your INR often and CONSTANTY in what you do, eat, drink etc is important. Write things on a paper. It will soon be ok again I am sure.

I guess they reduce your INR when it is so high and then you can not eat extra greens. I monitor my own INR and very seldom change the INR. So I know what I have been doing, but as you must listen to what they say and they perhaps reduce your INR with less Warfarin, you cannot by yourself ALSO eat a lot of greens as that would be "double". I guess you have to avoid greens if you have got a contact with the hospital and they have said that. It will take a little longer but at least you know what you are doing. If you eat greens you MUST TELL it to the nurses.

Kerstin

loppylou68 profile image
loppylou68

Thanks for the advise

Shelinder profile image
Shelinder

Hi there ! Just when I thought my INR was levelling out - it fell drastically low last week. I've on wafarin since last March and was feeling positive with a few hiccups in the beginning... But I've started working and getting out and about too. I do have a question - I have dropped a dress size! Part of me quite happy about but also a tad worried considering I've not changed my diet except reducing alcohol! Is it APS or the Wafarin that affects the weight?

loppylou68 profile image
loppylou68

Good question about the weight loss??!!

But do wish I'd lost some....

Sounds like the reduction in alcohol lol 😁 thanks for the response it is reassuring that others understand as friends and family just can't understand and relate

Even tonight I had to argue about why I have to take medication at all......they thinks all meds are bad

henyrjonze profile image
henyrjonze

What base are you trying to get into? (In the USA, it's usually 3.0-3.5.) You might want to write down everything you want to eat (and drink). For instance, drinking a 6-pak of beer the night before your test is asking for trouble.

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