Lupus Anticoagulant...?

[BeckyPRP]

Lupus anticoagulant - I’m trying to find out information but I’m only ever redirected to APS info pages. Has anyone got any recommendations for general information please?

[BeckyPRP]

Hi.No, I do not have the diagnosis, I am a health professional who directs my clients to this site for support and guidance and I use it in the same way. I have come across a client who has been living with this diagnosis so now I am extremely confused!

[Wittycjt in reply to BeckyPRP]

Did you get my pm?

[KellyInTexas Administrator]

Hello Becky ,

I’ve just read your brief exchange with APsnotFab.

Firstly,

Where do you live?

In what line of health care do you work? You use with words , “clients” so I assume they already have a confirmed diagnosis from a physician?

I think it’s fantastic that you want to learn more about this condition to help your clients, and I very much applaud your effort to go so many steps above and beyond to do that.

APS is extremely technical to manage- and can vary greatly patient to patient depending on what kind of blood thinning medication they are on. This is especially true if a patient/ “client” is on warfarin.

For example if someone happened to be a registered dietitian, then he / she would know all about warfarin and the INR.

If someone were a health and fitness instructor, and were very good with supplements , this would be potentially very dangerous for patients with APS and on warfarin.

All vitamins and supplements must be first cleared and given the blessing by the patients physician first because they can interfere dramatically and dangerously with the medications that keep the blood at the right consistency for us.

That’s the main concern, for example.

I’m happy to have you learn all about APS. Please help us spread the word.

Tell us what exactly your line of work is specifically, so we can better direct you- so you can also make sure you are honing in on the precise areas you need to be, and avoiding any dangerous areas where you should not tread, and instead refer your client to their physician first, and then come back to you with with either the answer, guidelines.

Without knowing exactly what you do, this is a general , general response of caution, and gratitude to you.

Kelly

[MaryF Administrator in reply to KellyInTexas]

BeckyPRP I agree with this response, from KellyInTexas regarding patients with what is known as Hughes Syndrome, APS, Antiphopholipid Syndrome and or Sticky Blood, who often have other associated conditions. Sorry for my short reply, currently reading and typing is tricky. I am also away travelling. MaryF

[KellyInTexas Administrator]

Dear Becky,

I took a guess a PRP, and saw that a lot of info came up on , “Protein Rich Plasma.”

There are centers across the USA that offer this service for conditions as broad reaching as pain management to hair restoration.

When dealing with blood products of any kind, it is important that the patient’s APS knowledgeable physician be consulted first to give clearance and extra precautions.

Often APS patients can have accompanying Sjögren’s which can cause them to be extra sensitive to any blood products. Often steroids ( especially solumedrol , can be needed, as well as dye free benedryl.

Tylenol is usually also given 20-25 min ahead of time.

These are a few examples only when dealing with biologics, and I had a similar profile ( and reaction that landed me in the hospital) when receiving fereheme.

[BeckyPRP in reply to KellyInTexas]

Hi KellyInTexas!! PRP is simply part of my email address and does not infer a condition - sorry to have you clutching at straws there! I am an NHS nurse in the UK working with an NHS Trust ACT service and for the first time I had a person referred to me (whilst an in patient) for support, advice and education. I was given his diagnosis as Lupus anticoagulant.. and the rest with you guys is history!

Sadly, the patient doesn’t live in my area and so I won’t be following him up but this is good information for the future; now knowing there is a great deal of confusion around the use of the term, I will be asking my lead haematologist to arrange a teaching session on this subject. Any guidance you can give in the meantime will be wonderful and I thank you all for your advice and comments so far.

[KellyInTexas Administrator in reply to BeckyPRP]

A game of Cludo is always good fun!

No problem at all, Becky- thank you for getting back to us, as I know your schedule is very demanding. Nurses are vital, and patients depend on them as much as doctors in their care, if not more often times.

Professor Hannah Cohen with UCLH and Professor Beverly Hunt with Guys and St Thomas are England’s Top APS specialty Hematologists. This might be a good place for the Hematologists at your hospital to obtain up to date information.

EULAR 2019 also has guidelines.

rheumnow.com/content/2019-e...

Also, there is an online quick course GP’s can go on APS to get continuing education units. ( I’m from the USA so I don’t have the link. A friend of mine in England showed it to her GP and he took it with her in his surgery - during his appointment with her! )

It will be GP’s and gynecology who spot the problems first usually. Gynecology are better trained that GP’s as a rule-

I think many of us would agree... it’s the GP’s who desperately need more training.

Becky... you are fantastic! From the bottom of our hearts- THANK YOU FOR ALL YOU DO!!!

[Yllek in reply to KellyInTexas]

Hello

I’m the friend in England but my GP didn’t do the course during our appointment! He did it in his own time which I was truly grateful for as it showed a willingness to learn about the condition and gain a better understanding to help me.

Sadly, he’s leaving the practice but I’m hopeful my next GP will have the same level of commitment and I plan on passing the GP course information on to her as well.

Here is a link to the GP course that you may find helpful. I’m pleased there are other health professionals who are trying to help those of us with APS.

elearning.rcgp.org.uk/cours...

Kelly 🇬🇧

[KellyInTexas Administrator in reply to Yllek]

Thank you, Kelly!🌵

[baba in reply to BeckyPRP]

What is "ACT service" please?

[BeckyPRP in reply to baba]

It’s our abbreviation for AntiCoagulant Therapy... by ‘our’ I mean my department...

[baba in reply to BeckyPRP]

Thank you! Abbreviations can be SO confusing.

[Jumper99]

I just looked up PRP as I didn’t know what it was. It says it affects platelets and thrombin among others so if someone has APS this would only be approached with extreme caution and permission from the patients consultant.

It also specifically states that PRP is contraindicated for people on anticoagulation, any anticoagulation not just warfarin.

[Lure2]

Lupus Anticoagulant is not a diagnose but one of the 3 antibodies we take to have a diagnose of APS as to bloods. Also a diagnose of symptoms.

I have all the 3 antibodies positive in persistantly high titres since 2002. Lupus Anticoagulant can make selftesting difficult as there can often be a difference between the fingerprick and the vein-value. Also Lupus Anticoaulant can make the INR very erratic.

Also said (together with the two other antibodies) to be a greater risque for thrombosis. Usually need Warfarin for anticoagulation.

[Lure2 in reply to Lure2]

Hope you do not misunderstand me; To get a diagnose of APS we need both symptoms and bloods (50/50). Also interesting if any relatives also have got the illness as APS may run in families.

[baba]

Thank you!