How does high INR make u feel? - Hughes Syndrome -...

Hughes Syndrome - APS Support
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How does high INR make u feel?

WendyWoo50
WendyWoo50

So last week INR 16.8 Monday. Retest Tuesday 5.4.

This Monday 7.3 vein (6.9 finger prick)

I don’t have a headache 🤕 amazing but my body hurts so much. And I’m so exhausted I’ve slept on and off all day 😢

Any one else suffer like this when INR is hi?

11 Replies
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HollyHeski
HollyHeskiAdministrator

Sorry Wendy not on warfarin -

What does your specialist suggest?

Hopefully others will answer soon?

Hope you stabilise on your warfarin and feel better soon x

Thank you. I hope so too Holly because I really am getting to the end of what I can cope with. I have so much to live for but all I’ve really done this year is swing extremely from 2.0 to 16.8 and be in Excruciating pain.

A month ago on a cold, wet, very windy day I almost walked into the sea. I knew once I got in - there would be no way out. I sat there frozen for 2 hours. Rejecting my husbands calls he was worried sick.

Then my niece in law rang and clicked me out of it.

It really scared me. That’s how low I have got. It’s the pain I can’t stand it any more. I’m going to see a Counseller ASAP but I scare myself at the thoughts I’m having. 😢😢😢 Sorry to burden you. How do u cope. I used to be so strong now I cry every day.

My gorgeous granddaughter makes me smile she just melts my heart and the thought of her growing up without me, without knowing how much I love her is what keeps me alive. Of course I love my husband, son and parents but feel such a burden to them all.

HollyHeski
HollyHeskiAdministrator in reply to WendyWoo50

I only had 3 months of hello on warfarin, high & low INR, being told it was my fault re diet!???

I saw dieticians and knew I was following the rule book, was in and out of hospital with suspective bleeding & then clotting, finally I was believed and tried on clexane.

Result was while on warfarin I had further vascular problems that I live with to this day - but I'm still here!!

I do know how low & desperate you feel and can totally emphasize with not just you but your husband too-

Can you not trust heparin?

Please keep trying (and I know you will for your family).

You are not a burden yo your family as they are 'in' this as much as you, because they love you so much (you know this).

Guilt - omg do we feel this!! My kids (29 & 31) don't have many memories of me being well, they remember birthdays with me being too ill to enjoy, or in hospital, I am ok at moment, but they know I could flare at any time.

I try to be more open, naturally I'm a positive person, live for every day.

You can get through this but may have to try other anticoagerants to get the right balance?

Keep going xx

Thank u for replying. It is so alien to me To feel like this because, like you I am usually a very positive person.

You really have been through it too.

Last month I discussed with my haematologist everything. She is not happy with what I’m going through. I can’t have clexane/heparin (as was the original plan to swap me) as I react so badly. Not sure how to upload photos. My Whole stomach was black with huge painful golf ball sized lumps under each injection site. So after 4 days I had to stop.

We discussed another oral anti Coag but in the end she said she strongly felt I would be no better off than I am now And without clexane to use to bridge she felt I’d clot before I could stop Warfarin and start the new drug.

Many drugs (including every anti depressant) interact with the heart condition I have and have the potential to cause cardiac arrest / sudden death so can’t have things that could help - hydrochloroclixoquinine trial almost killed me (that’s how the heart condition was discovered.)

So everything is against me.

Kalykrill
Kalykrill in reply to WendyWoo50

I know exactly how you felt at that moment. I had a DVT the entire length of my right leg that broke off and ended up with a lot of PEs, clit in my heart, left arm, stroke, and my liver. I was in hospital for 2 weeks. When I was released they only gave me warfarin, and at the time I had no medical insurance. I was bed bound unable to walk for 6 months. Before I got sick, I was very athletic and worked out all the time, played softball and basketball. This event changed my life completely forever. It all happened in april of 2010. I can not walk very well at all, and it is very painful. I was in so much pain 24/7, and I thought about ending my life. I started drinking very heavily and my INR was in the 20s. I would wake up with bruises that cake out of nowhere all over my body. One night I had a moment that snapped me out of it. I have 4 awesome boys, and I decided to live for them. They are the reason I am here today. I am a disabled vet, and when I finally went to the VA for help and started getting all my drs and specialists. It took 10 months after my incident to find out that I had this disease. I was finally getting the care I needed, and started on pain medication. It took awhile to get the right mixture of pain meds, to where I was finally able to start living a better life. I will never be able to hit the gym and work out, or play sports again, but I turned my focus on to my kids and my family. Until last year, I was feeling ok, I still can't walk very well, or sit very long, but it was better than before. Last july 2019 my pain dr. Started to take away my pain meds gradually, and these past 6 months, I am back into not being able to live a decent life. I spend most of my time in bed, and can't do much of anything. Hard to sleep, hard to sit in my special recliner, hard to do anything. I keep pleading with my dr, but he doesn't seem to care, he is more worried about his license than my quality of life. I keep pushing through each day for my kids, but it is getting hard. I see my psychiatrist, and in all kinds of therapies, but being in extreme pain all the time, it just wears you down. I am fighting through, hoping that something will change. Just know that if it is hard to focus on yourself, focus on others. I have my boys to focus on, so that is my saving grace. I hope you get things under control, and your quality of life improves. You are not alone.

MaryF
MaryFAdministrator

I have never been on Warfarin, only periodically on Fragmin, so not experienced an INR fluctuation. I hope your main specialist is helping you, and that you feel much better soon. Have you rung your GP recently, to explain how dire you feel medically and physically as you need some support. MaryF

WendyWoo50
WendyWoo50 in reply to MaryF

Thank u Mary. Everyone knows how I feel but no one can help. X

Splodge60
Splodge60 in reply to WendyWoo50

This is just how I feel. My medical stuff is more than I can bear right now. There are no GPs who have the time anymore to help or even just ‘listen’ anymore. I’m fed up with going to hospitals and sitting in waiting rooms for hours feeling dreadfully Ill. Lockdown has been a godsend to me as the only place I go now is for INR checks. I don’t feel up to talking to anyone anymore now and spend hours in and out of sleep. My biggest problem is constant bleeding from my mouth, whilst on Warfarin plus recurring DVTs. I think I’ve only had one PE but it may have been two.

Being in the UK (north of England), I would like to know if this Hughes/APS is relevant. I would prefer to write rather than go and see anyone, but, to whom should I write, given I have loads of co-morbidity problems, including cirrhosis and metabolic syndrome, diabetes, and other stuff. My Liver Consultant is not a person who is helpful either. I cannot talk to him. I just need a name, email and/or address if that is something anyone can help with please?????

16.8 I wouldn’t be able to stand mine has never gone above 7 then I felt awful it sounds to me that Warfarin is not working for you ? Need to change to something else ? Clexane you need to have one of the recommended consultants if you are not already, I am on antidepressants as well which really help me with my mood.

Thinking of you and wishing you well

I was on Warfarin for years (2006-2018). My INR was as low as 1.0 and as high as 8.0. I could never tell when I was subtherapeutic or supratherapeutic. I didn't feel any different. I had a stroke in May 2018 caused by a clot. I'd a headache for two weeks prior and another stroke in February 2019 caused by a bleed. I'm now on Lovenox injections twice a day.

What caused it to go so high? Do they know? I really struggled to keep my INR in the target range of 2.5-3.5. When I've gone to the ER with an extremely high INR, they've given me a Vitamin K injection to bring it down (then I had the opposite problem, my INR plummeted).

KellyInTexas
KellyInTexasAdministrator

Sweet Wendy,

Im truly sorry to hear of your struggles, both physically and emotionally. It’s difficult not to entwine the two together at times.

I feel very inadequate in my abilities to address any of these issues with you- for fear of saying the wrong thing. ( that’s why I’ve been mulling it over for a few days...)

But in the end who can you really talk to who truly understands it?

The answer might be a few key people.

Could the key to your own personal best be to take the best from each field and make the best recipe for success you can? I propose the answer is very likely it is. I’d like to help you break down a step by step plan just as a starting point to help ground you if you ever feel like your having a “sea side moment” again.

1. Your Rheumatoligist is one key ingredient

2. Your hematologist is one key ingredient

3. Your family member(s) which ever one that’s your “person” “people” will be another

4. If you have and spiritual or religious beliefs, that relationship whether it be internal within yourself, with a chapel, synagogue, mosque, temple, etc, or a combination, could be one ingredient, depending on your beliefs

5. The kindness of Your other tribe. We are your tribe! We speak your language.

We actually KNOW your pain. We know what freaky symptoms you get- all icy cold and tingly and faint and horrific migraines.... sometimes for me even when my INR is in range... weird.

So how can I help you specifically immediately?

I can answer some of your questions.

1. Yes. I can really feel rough when my INR swings erratically. My Hematologist told me this was normal.

2. Additionally, I’ve been having a lot of problems lately keeping it stable. ( not as hard of swings as you. But up to high and mid 8’s every other week for just over a month. Or 7’s. Then slight adjustments- then 5’s which is ok)

The migraines which ensue are horrific if I get much over 7. It triggers two day migraines. I can’t see or read at all. So each week for about 6 weeks I’ve been down and can’t type really at all for 3-4 days out of 7, and limited reading.

I was sent to an endocrinologist- saw her a week ago today. may need to increase steroids. That has risks. So she’s getting with my team to address migraines.

My neurologist here in Texas had mentioned about a year ago the possibility of me seeing Dr A specialty neurologist in London that knows about headaches and migraines. Peter Goadsby.

She’s recommended I go there next.

The day after I saw my new endocrinologist, I flew to New York/ Princeton New Jersey. I had a scheduled hematologists appointment to renew my INR draws for 2020.

Our daughter is getting married in June in Princeton. ( to a young man from Germany who will graduate with his PhD from Princeton this May...) so I wanted all my lab orders in place again. I do this every year with same hematologist...

But the day I left Princeton closed- the chapel closed... next day cases of Corona blossomed.... then WHO declared it a pandemic while I was there... Germany closed its borders- Trump tightened our borders... I had to study on line my home town’s city emergency plan ( in conjunction with our local hospital which is getting guidance from CDC) on how to handle my business- employee safety and switch to on line business practices. ( from my perspective, most is already set up) etc, etc...

The point: I will not be able to fly to London.

3. I think you should at least have a conversation with your hematologist about her thoughts on fondaparinux. I’ve mentioned it before. It’s a chemical heparin. For some reason APS patients who are difficult to treat especially with neuro involvement seem to do a little better. Of course there is such a small sample size of patients there is no real data. Just anecdotal evidence. This info is from Prof. Beverly Hunt, and comes to me on good authority. ( My Rheumatoligist Dr Natasha Jordan told this to me herself during our consult on Dec 6th 2019 - as she shares a patient with Prof Hunt. )

I will also tell you that I have been told on equally good authority , but not personally by a doctor but by someone who I believe to be trustworthy, that Prof Hanna Cohen has a different view, mainly due to the unavailability of a reversal agent.

Due to the conflicting opinions that came back to me , I asked my Hematologist in Texas his opinion, and shared his thoughts about the possible discrepancies in views between the London Preeminent hematologists, with particular regard to a reversal agent.

He told me that he uses fondaparinux, but not for APS. He reminded me ( as he always does) that he is not an APS specialist, so of course has not had any experience with it in APS patients.

In his non APS patients, he uses the same reversal agent as apixiban. He said it works equally well, ( at the same site) and for a fraction of the cost.

By the way...Dr Paul Holmes is also finding fondaparinux to be better than ( Enoxaparin?) some cases with refractory APS.

It’s a once a day injection- once every 24 hours- and Dr Jordan said it’s nice in that it does not sting.

I just have to wonder ..., would it be worth a try? Especially now when it might be a little more risky going in for blood draws so often?

I’m thinking to call my Hematologist and ask again. When we discussed it I was fairly stable. The next week ( Feb 12 ) is when the INR shot to about 9.

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