Side effects inr too high: For the last... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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Side effects inr too high

Sanpap
Sanpap

For the last few months my inr is out of control. I SHOULD SIT BETWEEN 3.2 to 3.5 (unrealistic I know) yet I keep hoping. I have multiple medical issues that impact on my inr. Most common is infections. What I want to know is do others have heart racing symptoms when their inr is too high. I am o.k. at 4 but beyond that my heart struggles?

6 Replies
oldestnewest

Hi,

I read that you are in Australia and that you ( now also your daughter) have had a lot of troubles since you were diagnosed with APS several years ago.

You should have a Specialist and you should do doubletests with the CoaguChekXS (I do not know if you have that machine in your part of the world.)

I know the fingerpricktest does not show correct bloodresults in comparison to the vein-value at the lab. That is the problem for most of us.

They have new teststrips now for the CoaguChek XS which are probably better but when i tested they were still not ok in comparison with the other meter I use. But if the difference is always the same you may be able to handle it. Then you know the veinvalue. My fingerprick value is always higher (4.9 in the finger perhaps 3.7-4.1 in the vein and that is ok for me. I can never know for sure unless I go to the hospital to have a bloodtest. I do not go there very often as I have had so many doubletests within 4 hours time, so I know my INR and try to keep it there.

By the way you say you should be between 3.2-3.5 in INR and that is a bit low perhaps.

You earlier talked about a higher INR when you were on Warfarin before you changed to the oral anticoagulants but now you have returned to Warfarin.

I have heart-issues and pulmonary hypertension but if you get a Specialist he could remit you to a Cardiolog who can help you with your heart-issues. Hope you do not have high bloodpressure.

With this illness it is important that we try our utmost to keep a stable and rather high INR-range (very often up to 4.0) to be without symptoms (even if we do not know of all of them). I know it is easy to say but to do it .......... at least we can get a Specialist if we fight hard enough.

Best wishes to you from Kerstin in Stockholm

Sanpap
Sanpap
in reply to Lure2

Thank you for replying.

I do have a machine and so does my doctor but we have all thrown up our hands in frustration and i do vein testing upto 3 times a week at local pathology lab and they text me results and dose. The service is great and my specialst is an oncologist and hematologist for breast cacncer and Aps i also have a neurologist after stroke as well as a urologist for a neurogenic bladder. I also have what they are calling gut angina. I have Glaucoma My medications are many but i am grateful to be here.

After saying all that my biggest problem is a fluctuating inr today it has dropped again yet it was over 4 (vein tested) on Friday with same dose same food. My doctor suggested taking my blood pressure when the heart thing happens. I told her I would post on this site to see if others have the Same symptoms.

I am also lucky she suggested that I take my blood pressure when I feel my heart struggle, because last night when it happened I found out whatever I was feeling was related to a sudden drop in blood pressure and I had wrongly thought my heart was racing when I was really feeling it slowing so much I couldn't catch my breath .

I am sorry to engage the group on the wrong symptoms but thank you all for caring this site keeps me informed and stops me from feeling alone.

Lure2
Lure2
in reply to Sanpap

Hi,

You are most welcome here as you like us have a diagnose of APS.

We know there are many different symptoms and some of them may be related to APS (more than we can imagine sometimes). You have had symptoms that are not related to APS also.

I wonder if you have a difference between finger and vein like many of us have here? I you doubletest several times you will find out if the difference is always the same between the two. Make notes!

I suggest you buy a machine to have at home to test your bloodpressure! This is my second machine for high bloodpressure.

Best wishes from Kerstin and a Merry Christmas!

MaryF
MaryFAdministrator

Hi, are you under medical care of one of our recommended specialists? Or are you due a medication review, with whoever is looking after your INR? Please if you do go along to your consultant, make sure your B12, D, ferritin, folate and Thyroid is up to scratch, as this can impact how you fight and deal with infection if levels are not quite right: ghic.world/

MaryF

Sanpap
Sanpap
in reply to MaryF

Thank you for responding .

I am in Australia and I am not sure if any of the recommended specialists are here?

Can anyone give me a name?

MaryF
MaryFAdministrator
in reply to Sanpap

Here are the specialists on the front page, some are in Australia: ghic.world/ MaryF

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