Shooting pains: Hi guys , my INR has... - Hughes Syndrome -...

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Shooting pains

amy1808 profile image

Hi guys , my INR has been below range for a few weeks now . They upped my warfarin but it still is being a pain . I’m starting to get shooting pains in my arms and head but mainly arms . Does anyone else suffer with this and any tips on getting the inr up naturally please

21 Replies

How low is it? If mine are under 1,8 im getting fragmin injections.

Have they found a reason why its low?

amy1808 profile image
amy1808 in reply to murphylotte

2.5 my range is 3.5 - 4.00 , fragments if 1.5 . Can’t find reason it’s gone so low 🤷‍♀️

murphylotte profile image
murphylotte in reply to amy1808

You doing same stuff as when your med work prober?

I find the pain come if i do to much and forget myself...

amy1808 profile image
amy1808 in reply to murphylotte

Exactly the same , I’m going to go to warfarin clinic on Monday to get my machine tested against there’s

murphylotte profile image
murphylotte in reply to amy1808

But why would you work prober, if your medication dont?

You must be tirred when its so low?

amy1808 profile image
amy1808 in reply to murphylotte

Normally it doesn’t have that effect but to I’m a zombie

MaryF profile image
MaryFAdministrator

Hi, that sounds tricky, can you give your consultant a ring, the one who prescribed it, I would not leave that running too long, I think perhaps tell them sooner rather than later about what is currently going on. MaryF

Amy I am going through a similar situation. Your not alone. I have only been on warfarin 3 weeks. My first few readings were going good and today was 1.6 and I knew it wasn’t right before she checked it. Shooting pain come and goes on left side of my chest and very tired. It is a scary feeling but at least we have others to talk with. I have been doing the same thing for 3 weeks so I am not sure what has caused it either. Wish I had other advice besides “your not alone”. Hope you feel better soon

amy1808 profile image
amy1808 in reply to Ylmom

You too , pain in the behind this disease

KellyInTexas profile image
KellyInTexasAdministrator

I know we keep harping on this issue , but make sure your strips are from the new lots, not faulty.

Also, the coagucheck is calibrated with the code chip that comes with the strips. That’s what calibrates the strips to the machine.

Every now and then you may need to do yearly self maintenance on your machine. Call your Roche tech support number to have them walk you through it. It’s quite easy. ( if you have any questions.)

You could check your CD if one came with your unit, or go online to Roche as well to make sure no updates have been added.

I've been on warfarin since my diagnosis with APS in 2001. I followed by wise diagnosing hematologist's advice and kept a (what seemed to me at the time) ridiculous chart detailing all foods eaten and activities done. I found that for me, activity levels as well as time spent in the sun both influenced my INR.

I really feel for you. My INR is supposed to be 3.5-4.5 with a target of 4. My symptoms get worse when under 4. I have headaches, muscle aches, exhaustion and shooting pains.

If it gets too low 3’s I struggle to get out of bed. At 3 I’m on Clexane injections.

I’m currently on 19mg of Warfarin, I understand it is what I need but everyone says it’s a lot!

I plot graphs of my weekly INRs it looks like a mountain range. I was in range on average less than 25% last year.

This year I’ve had 9 tests so far and 2 have been in range. I’m sure if I had a stable INR I’d feel so much better.

[yes, I am Lupus Anticoagulant Positive]

I think you need to see your haematologist again and make a clear plan as to when you need anticoagulant injections. Don’t be afraid to take higher doses of Warfarin when prescribed. It’s No good when it’s too late. Warfarin is supposed to protect us and give us the best chance of feeling better.

Anyone else have a graph like a mountain range?

Never done a graph! Lol. But certainly I get variability.

I have to clexane if below 3.

I vary from 3 to 4.4. Usually about mid 3 s but my anticoag clinic won't let me self control my dose and are very slowntongive me my results aonits quite frustrating (inhave a home meter

Are you taking any over the counter medicines with vitamin K in? Do you eat alot of green leafy veg?

For some pwoplwntheynso need very high doses as they metabolism it so quickly. Every patient is so different are you bridged on clexane untilntheybget you in range?

amy1808 profile image
amy1808 in reply to Penguintor

No nothing different, just had a blood test at the Dr results back tomorrow. But coming home I had another funny turn , very light headed, spaced out right side weakness and I couldn’t swallow very strange . Feel a little better now but it was scary.still a little weakness and spaced out. Funny thing is it was the same time yesterday when I had one , and I’m starving again but had lunch at 1.45 so shouldn’t be hungry 🙁

KellyInTexas profile image
KellyInTexasAdministrator in reply to amy1808

Amy,

I’m sorry,

I can’t remember what all we have discussed on various occasions, but I do remember we are similar in some areas. ( some neurological symptoms.)

You are getting my attention again.

Remind me- are you on warfarin? INR range? Do you see a neurologist?

What you are describing could be ( I’m only saying could be ) signs of seizures.

As you might remember, I have them, and these can be similar seizure symptoms.

Please consider asking your doctor about this.

KellyInTexas profile image
KellyInTexasAdministrator in reply to KellyInTexas

Amy,

Sorry, I now see clearly you are on warfarin!

( thanks for your patience. My eyes are my down fall with APS and some days I can’t “ scroll” with my eyes if they don’t re focus well. They loose the ability to refocus. I apologize. Ischemic optic nerve atrophy- IONA it’s calked. Little strokes to optic nerves.)

Hi again,

One year ago you told me that you selftested every second day. You also said you were LA positive.

I wonder if you have doubletested your INR in the vein often enough to know that the difference beetween fingerprick and vein at a lab, is the same.

I am sure you know about greens and how it will change the INR. I also wonder if you have a Fragminshot to take when you know your INR is too low? You should not have difficulties with the iNR if you selftest that often and get a shot when INR is too low.

Some of us need an INR near 4.0 to be without symptoms.

Kerstin

Just had a long chat with my warfarin nurse , this all started about 3 weeks ago , 3 weeks ago I had my merina coil removed !!!! Looks like that could be the cause, had my vein test this afternoon so he will look out for results a adjust warfarin as necessary. He said hormones can change readings quiet a lot and being a woman of a certain age doesn’t help 🙈

KellyInTexas profile image
KellyInTexasAdministrator in reply to amy1808

I’m glad that’s removed, actually! Probably better.

Amy a couple of stiff drinks for INR and Pain !!` Hope your feeling better - i get shots in neck and upper and lower back and then injections in the disk area's of spine for my KISSING OSTEOPHYTES between C-3 and C-4 and leg and arm pain BUT they aren't as bad as the others.have you aver had any type of lidocaine shots ??

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