Inr fluctuations

[WendyWoo50]

I experienced neurological problems over the weekend on Monday I felt much better my blood was 4 my target. Tuesday 4. Thursday 3.1.

I did nothing different so why??? (I am lupus anti coag positive)

I called my Haematologist who advised I rang Prof D'Cruz at Guy's I see him periodically but have a fab rheumatologist locally (Dr. DeLird). I'm awaiting a call back now.

Oh and my vein test was 0.1 lower than my finger prick.

What can I do because I'm suisidal with this horrendous headache and terrible pains in my body. I need someone to help before I throw the towel in. I can cope when it's just my body as I can read, meditate, colour, watch TV, do research for work, chat with friends etc but when my heads this bad I struggle to type this now. I'm sure it's not the weather as I'm always better abroad in the heat I hope ur all ok out there 💋

[HollyHeski Administrator]

Hi, this happened a few weeks ago and you were going to try and talk to your specialist? Its been going up and down for ages, you must be exhausted.

If its 3.1 I would take the clexane, .1 above your recommended 3, is not going to differ...

I think you need an urgent appoitment to get everything checked out, I hope you get a call back soon.

xx

[WendyWoo50 in reply to HollyHeski]

I did reply to this message but I must have forgot to submit it! Lol

Getting an appointment is easier said than done. I made graphs of my inr and took it to c my top Haematologist he agreed it wasn't good but said there was nothing else they could do and they will see me in a year. I have now sent a long email along with blood test results to my top specialist Professor D'Cruz in London and hope he replies!

No doubt he will be on holiday !

[HollyHeski Administrator in reply to WendyWoo50]

Yes appointments are easier said than done, but its good you've got your records and emailed Prof D'Cruz, it takes time to get a reply but I'm sure your on the case!!

Did you take the clexane and did it make any difference to how you felt?

[Ozchick]

Have you been on Warfarin for a long time? Maybe it's time to discuss with your Prof changing to Clexane or similar? Nothing worse than a continuous headache which doesn't respond to anything. I hope it improves for you soon.

[WendyWoo50 in reply to Ozchick]

I began warfarin on 4/7/15 - two years ago.

I discussed last month with my Haematologist other anticoagulants and was told aps causes clots in veins and arteries and warfarin is the only drug that protects against both.

[HollyHeski Administrator in reply to WendyWoo50]

I couldnt get on with warfarin, whilst on it I got two further stenoisis. So I was on clexane, clopydogrel and aspirin daily. I have had no further clots whilst on this trio.

Many of us are on clexane, heparin etc. for preventing venous and arterial clots. In my case I had had strokes and I still have a clot in my sub clavian artery.

There must be a reason your INR is so unstable, mine was warfarin works in the liver and I have liver disease so couldnt break it down. With yours so unstable you are at risk of further clots and its making you so unwell.

I really hope you can get some further help, maybe aspirin with the warfarin, or some other solution xx

[MaryF Administrator in reply to WendyWoo50]

Hi, it is not the only anticoagulant, but each person may suit a different type, it is important that you have a detailed chat with your main consultant if any changes are happening on your current medication. MaryF

[DannyBoy1]

I am good at stating the obvious. No one has mentioned diet. You may have already considered diet but it can dramatically effect INR ranges. There are certain foods and supplements that can cause these swings in me. Somewhere on the Hugh's site there is a list of things that trouble us. I wish you well.

[WendyWoo50 in reply to DannyBoy1]

Thank u. Yes I am aware of diet, mess, alcohol etc and try as much as possible to keep thins the same each day. 💋

[KellyInTexas Administrator]

Because I'm in the arm pit of hell for medical care on APS ( Texas) I find watching the you tube patient day videos from the Hughes team and London Medical complex extremely vital to actually STAYING ALIVE. (?seriously- no exaggeration.)

I have become equally unstable lately, and I wonder if perhaps if now I'm also Lupus anti coag positive- but I digress. Sometimes I clot despite being relatively stable. That means if I dip to 3.3 for 48 hours I can clot.

My point- I saw the other evening prof Hunt Mention that if, despite being anticoagulated on warfarin, a patient clots, that patient needs to be put on an additional anti platelet. I can't remember the name of it. Google professor Hughes patients day and watch a few of those. It's a really short one- maybe three min. It was just before the RAPS trial results could be public ally announced. 2015 patients day. There are a few doctors standing in a line in front of the podium...I emailed it to myself to show my hematologist.

If you can't find it, let me know. I'll email it to you. My heme needs to know this for my benefit.

[Wittycjt]

Might it be clopidogrel? I think it may also be called Plavix?

[KellyInTexas Administrator in reply to Wittycjt]

No. It's an odd one. Those are common. I looked up video. It's from the Hughes syndrome Foundation Patients Day May 13th 2015

Q &A Memory Loss and HS APS is there a link with Dimentia or Other Brain Disorders

It is only 3:58 long

I believe it's actually Hannah Cohen who so astutely speaks to adding an anti platelet regime to warfarin therapy. Additionally she suggests doing a specialized assay on factor 10 - independently pulling apart some of the cascades to check effectiveness of individual medications.

The anti platelet she recommended was ( please forgive my spelling) dipiridimol.

Wendy- did you catch this?

[WendyWoo50 in reply to KellyInTexas]

Thank u I will watch it later. Sounds like I need this info. 💋

[Wittycjt]

Dipyridamole ( persantine) aha! " armpit of hell " is that a pun, or " no pun intended" lol

[KellyInTexas Administrator in reply to Wittycjt]

That's the medication! Thanks Cindy!