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edgewater100 profile image
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Just FYI I am on warfarin my INR is 3.9 and I self check, I need this terrible feelings gone!!

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edgewater100
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KellyInTexas profile image
KellyInTexasAdministrator

Hello, Edgewater 100,

I'm sorry you are feeling anxious. This must be a terrible feeling for you. Being ill can certainly cause these feelings, no matter what the illness.

I'm not an administrator, just a friendly APS patient with a friendly heart and ear until an admin tunes in.

They are quick to clarify they are not medical doctors and can't give medical advice, but are wonderful at procuring published articles pertains to APS so we don't have to spend hours searching. Also, they save us time helping us connect with others with directing us to APS specialists , asking others on forum, or helping learn how to better reach out .

I've learned they ask important questions to help distill the most important information from you to help you the most efficient effectively they possibly can, so let me try to prepare the way !

Firstly, in what country do you live?

Secondly, do you have an official APS/ Hughes diagnosis? Perhaps we can help you with that. Sometimes that's not as simple as it may sound. Let's make sure you are safe in the interim if you are not sure. Please explain in full your current status with regards to status with current diagnosis or testing panel.

We will wait your reply for further clarification and assistance, and welcome to our friendly site! We consider ourselves a serious group of international comradrades helping one another out with accurate an compassionate support, so we look forward to helping you in every way we can.

HollyHeski profile image
HollyHeskiAdministrator

Hi, sorry you are feeling so anxious, not only are you dealing with a serious health issue (APS & Lupus), which in its self can cause us to be scared and stressed but there are several links in rare cases to be linked with depression.

I am not up on meds that you can take but hopefully others on here can advise. From experience voicing and sharing our conditions can help and at least then we find we are not alone.

I know when I get anxious or stressed, I go out and start pruning something in the garden!! Yes sometimes bushes end up less than I wanted but then I relise I feel better! Sometimes I walk or even just have a bubbly bath. These are all temporary uppers but every little bit helps.

Hope you feel better soon. Xx

Lure2 profile image
Lure2

Hi, I answered your other question and now i see that you selftest.

Then I just want to know if the INR 3.9 is from the machine or in the vein? I am LA and for me it is a difference between the vein-value and the fingerprick-value. It is the vein-value that counts and that is much lower then the selftest-value. In that case the INR 3.9 can in fact be lower. Hope you understand what I try to say.

I see that you have already had 2 answers from our friendly members we have here

Kerstin

edgewater100 profile image
edgewater100 in reply to Lure2

My machine is one point higher so it showed 4.9 which is 3.9

Lure2 profile image
Lure2 in reply to edgewater100

As to your INR; Do you have Lupus anticoagulant? That is not the "illness Lupus" but one of the 3 antibodies they test to see if we have HS/APS.

If you have Lupus Anticoagulatn you may have big differences between the machinetest-value and the veintest-value. Can differ a lot for some of us.

I have Lupus Anticoagulant (LA) and I had to test several months double with my machine and also in the vein at a hospital lab here in Stockholm before I could start selftesting by myself.

There was a difference every time and it was important that the difference was the SAME EVERY TIME I tested at the hospital. There can be a discrepence of 0,1 - 0,2 or 3 which is tolerable but not more as then you can not know your INR and selftesting is not safe.

I must tell you that my difference is not always 1.0 like you have got. When my INR is higher the difference is bigger. Have you done these doubletests I talk about?

This can be important if you use Warfarin and have HS/APS and LA also.

Kerstin

edgewater100 profile image
edgewater100

Yes I was diagnosed 4 years ago with APS after discovering several TIA on an MRI of the brain, I was also diagnosed with Lupus around the same time, I am currently being treated by a Neuro, Rhuemy and hematologist and my Primary doctor. I still have daily migraines even with a 3.5 to 4 INR, I am no doing Botox for my migraines. I feel like I am on top of it but this anxiety is really something I need to get rid of or get it in check.

I am in the USA

KellyInTexas profile image
KellyInTexasAdministrator in reply to edgewater100

My neurologist is administering cranial nerve block injections every 4-6 weeks. It's more to help if my INR dips below 3.5 finger prick. Keeping INR above that really keeps migraines at bay for me.

It's a steroid medication in the injections. ( 24 shots loaded into 6 syringes. Very quick!)

Lure2 profile image
Lure2 in reply to edgewater100

Hi Edgewater,

I hope you feel a little better now after your questions and the answers from our members.

If not you are always free to ask a new question on here if there is something that you are wondering about.

Best wishes from Kerstin in Stockholm

Lure2 profile image
Lure2

I agree with APsnotFab what she says about antidepressive medication.

I take it in liquid-drops as I have tested I am CYP2D6, which means you are a "slow hydroxyliser". It is called "Cipralex" here. I am taking a very low dose from it anyway. I am from Sweden and can not explain it better. I think you have got the meaning of it anyway.

Kerstin

Beartje profile image
Beartje

Hi edgewater, I suffered from a depression a few years ago (this was prior to APS diagnosis). The trigger was a job that demanded way too much of me (and the death of someone close to me in that same time frame). Asking for professional help was very hard for me at the time, but I am really glad I did it. I went to my GP to talk about it. She referred me and I had cognitive behavioral therapy. The GPs thought was, that we should first try that, and then if that would not be effective, we could always later try anti depressants. Obviously everyone is very different and in different situations. But in essence, any illness causes stress, which can become too much. In my case I was indeed diagnosed as being in a depression and the sessions where very helpful and I was out of depression after a few months. The psychiatrist tought me how to recognize stress in my body, how and when to say 'no' if work became too much, how to not demand too much of myself and feel okay about that, and how to accept negative thoughts, but to then change them so I would not get into this downward thought spiral every time. This therapy and the things I learned actually now (years later) also helps me to not feel so sad with all the new illnesses I have. It seems to be more of a future proof solution that taps into the cause of things. Nowadays I can stop the negative thoughts more easily (I still have them of course, but I am able to give them some rational attention, but then let go). Next to this I also do some more general stuff to lift my mood: a playlist of happy songs which I use when needed, meditation, walking outside in nature, taking photos - you want to do some things you really like and that get you in a flow. Hope this helps! You've got stuff to do :-)

edgewater100 profile image
edgewater100 in reply to Beartje

Thank you everyone for your support! I am trying Ashwaganda supplement, so far it seems to help, fingers crossed!

Wittycjt profile image
Wittycjt in reply to edgewater100

Is it helping you?

Lure2 profile image
Lure2

Hi Edgewater,

I know you selftest so be careful as these things can change your INR up or down.

Glad if you are better! I read about it and it will most likely help all sorts of illnesses.

Kerstin

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