Stonkingly high results

[Kokica]

Hi, does anyone there have significantly high beta-2-glycoproteins-1 antibodies and what (if any) changes were done to your treatment? Normal range for these is 0-10 and I am well over 1,000 (currently 1,178). I’m patient at Guy’s and there’s a bit of debate going on re: what to do with me. I’m getting rather p****d off to be honest and feel like discharging myself from everywhere. My consultant (saw him last Tuesday) refuses to discharge me . I understand I’m overreacting but this has been going on since September 2018, with every man and his dog, having an opinion some in direct contradiction to another. Current ‘spat’ is between my Hughes/Lupus unit and Haematology. Neurology agreed with Hughes/Lupus, but Haematology is sticking to its guns. I’m in the middle and getting quite angry. Any/all advice gratefully received. Thank you

[Lure2]

Hi and welcome to our APS-group! I see you had a diagnose both of Lupus and APS three years ago.

I wonder; have they tested you twice for the three antibodies they test for aPS? Were they positive all ot them or only Beta-2Glycoprotein 1?

I understand that you have Specialist of autoimmun illnesses as APS and SLE (Lupus) often go together and can be difficult to diagnose even for Specialists.

I also read that you 3 years ago had blurry vision among other things and I wonder if you have got something to thin your blood like an anticoagulation drug today.

Why do they not know (as you say abbove) what to do with you.....I am from Sweden and perhaps I have missed something here.

[Kokica in reply to Lure2]

My main consultant is looking to put me on warfarin, but haematology is disagreeing with him... my results have been consistent for 2 years now and keep going up. I’m also waiting for cardiology results, so I will see what next. Should be due next week. Vision is still blurry, etc. I think the main problem is that I’m “over doctored” so to speak - so everyone wants their bit of input

[Lure2 in reply to Kokica]

We do need a Specialist who is specialized in autoimmun illnesses! So many Doctors do not know how to treat APS.

A Specialist and anticoagulation are exstremely important for us to get.

The number of titres are not so very important but more interesting if you have tested positive twice to all three antibodies. I have myself all three antibodies positive with very high titres for more than 16 years now. You did not answer that question.

Have they suggested you should make a trial of LMW Heparin or Aspirin before you start your Warfarin? Many Specialists do that to see how your symptoms react on that before they start Warfarin and LMW Heparin is a good anticoagulation drug also.

[KellyInTexas Administrator in reply to Kokica]

( I had a similar experience! Not exactly the same... but similar. Not in London, but in Texas.)

My Texas doctor sent me to London to London Lupus center for help 2 years ago. That’s how a Texan is involved in the the London scene.

Almost a year ago now I saw the lead Hematologist at UCLH. I made this choice due scheduling availability around other appointments I had.

So I also have experience in the London heme world. A very good experience. But a diverse and well versed and jagged edged history along the way and no one here has reached their destination. We just lend a helping hand and learn. And the top doctors ShOULD adopt this same philosophy but have the years of training to augment the heart and soul.

I encourage you to go ahead with sharing your story when you can- so you will understand the gamut of experiences here.

[KellyInTexas Administrator]

Oh wow. How very frustrating and exhausting for you. Don’t throw in the towel yet! You’ve come to just the right place to talk it through.

This is quite common.

So what is the issue? Forgive me for not being up to speed?

Do you mind recapping for us?

I will give you a little fair warning here, you may get a lot of feed back on your post! You are not alone, as I understand it. Many have had similar experiences.

*So a friendly reminder to all reading and responding... no name shaming specific doctors, please. *

Guys is a well respected institution. I am a foreigner so I fear I’m not in the position to speak comprehensively or sensitively on this. I dare to say like all large and complex institutions, they do mean their best ideally.

I would not be surprised if the senior hematologists both in London and internationally also strive to challenge some aspects of the criteria that may not always work well over the course of time statistically. This is why trials are run and new revisions are considered.

So let’s refocus our lense now back a little sharper on you.

Tell us all about it.

1. Your brief epic saga thus far- I’m guessing no Sidney revision clot? Otherwise we would not be discussing this? ( and you likely feel like you are at risk of stroke... so why wait for a stroke to prove a clot to begin warfarin... all indications are there plus clinical and lab criteria strongly met.)

Ready, set, go. Let’s try to constructively help.

[HollyHeski Administrator]

Hi, many of us have felt the way you do, please don't give up, you will get there.

What is the reason behind not giving you anticoagulation?

You've got a few questions here and we are trying to help, as Kelly says let's break it down. We are not medical advisors but can share our experiences and give support.

[MaryF Administrator]

That sounds very tricky and stressful for you, I am sure at some point they will be on the same song sheet. I am glad your consultant is not discharging you, it is better to be monitored and under them even if things are not quite as you want them yet. Please do stay on here for support and solidarity at such a difficult time. Please do let us know the conclusion when you have one. Have you had a look through our charity website? ghic.world/ Also as well as the general information on the site, there are Prof Hughes' blogs, they are always worth a read as most of us at one time or another can find one where the subject fits our own history etc etc, via 'patient of the month' MaryF