Good or bad app ??? 🤔

[amy1808]

Hi guys

Well just had my haematology app at Manchester royal . Had a lot of symptoms lately and felt pretty rubbish . Prof Hay said it's not the APS it's the Lupus . They never said for definite I was Lupus anticoagulant just sort boarder line hence no treatment for it only Warafrin . Now today he said o Anne you have always been Lupus positive 🙈quite high in fact 😡so why on earth have I never been treated for it. Good job I'm seeing new rheumatologist Prof Bruce next week .

[lupus-support1 Administrator]

There is a great deal of confusion regarding the lupus anti-coagulation test. It is confusing for both doctors and patients. The lupus anti-coagulation test is not a test for SLE (systemic lupus erythematosus) but a complicated clotting test ie for APS/Hughes Syndrome named after Dr Graham RV Hughes,an internationally acclaimed expert on SLE.

There is no single blood test that can confirm a diagnosis of SLE,which is why diagnosis can take a long time.It still took 18 months for Dr Hughes to formally diagnose me with SLE.

I am very glad you will be seeing Prof. Bruce and hope you will be feeling bettersoon.

With good wishes,

Ros

[amy1808 in reply to lupus-support1]

Hi Ros

I believe Prof Bruce is very good , Prof Hay today was pleased I was seeing him and he can actually speak to him and that they finally have me under one roof thanks to Prof Hughes team

It is all very confusing. He has taken a bucket of blood today just to see again if he has missed another underlying auto immune disorder x

[lupus-support1 Administrator in reply to amy1808]

If you want to talk at any time, please contact me.

[HollyHeski Administrator in reply to amy1808]

Great that you are being looked after by some good Professors, communication is the key between them.

Really hope you feel better soon x

[Lure2]

Hi Amy,

I do not understand if you have or have not been tested positive for Lupus Anticoagulant twice before you started Warfarin?

What antibodies for HS/APS have you tested positive to?

Kerstin

[amy1808]

Hi yes apparently I did Lure , nobody ever actually explained in detail to me until yesterday .

Not sure which anti bodies , I need to take someone in with h me , this brain fog is awful x

.

[Peecue in reply to amy1808]

I hope that you get to someone who actually listens. Brain fog is a nightmare especially when I don't recognise family members or carers who come on a daily basis, or you speak gobbledegook, especially when my INR is low. Last week I told someone I used to be a "Tshirt" I really meant a Teacher!. It's really embarrassing! Put your symptoms and problems in writing so that you and your dr have a list each. It's really helpful. It took a consultant, not a registrar who saw me first, to diagnose my Livedo, so that in itself helps in the diagnosis too.

[Lure2 in reply to Peecue]

Hi Peecue,

Are you selftesting now? Prof Hunt said an INR of 3.0 - 4.0 and also Plaquenil. Still taking that drugs?

What INR do you need to get rid of the neurological symptoms and how often do you selftest if you are now doing selftesting by your own?

If you have those horrrible symptoms I think you should test more often and keep near the INR of 4.0 to keep them away from your system.

Have you spoken with prof Hunt about the symptom that you do not recognize family-members? I remember that I forgot if my parents were dead and what occupation my children had a couple of times before I was well anticoagulated.

Best wishes from Kerstin in Stockholm

[Lure2 in reply to Lure2]

Peecue,

Also do you have something to take when the INR is too low and you have got symptoms? I have LMW Heparin(Fragmin) shot to take.

Kerstin

[MaryF Administrator]

Do let us know how the new appointment goes. I am really pleased you are going to see him. MaryF

[amy1808 in reply to MaryF]

Is he good Mary ? X

[MaryF Administrator in reply to amy1808]

I have not seen him personally but have heard very good things. MaryF