Lupus like syndrome??

[Greenmil3]

Hi all

Had my first telephone appointment with Professor Hunt last week and after a lovely chat she said she thinks as well as the Cerebral APS that it looks like I might have what she calked(I think) Lupus Like Syndrome? Has anybody either heard or know about this as there is nothing out there to read. I am not positive for SLE but have a lot of the same symptoms.

I may of misheard her or written it down wrong so if I have then please forgive my terrible memory.

I am also now suffering from psoriasis on my face around my eyes and on the upper eyelid so feeling awful as well!

Still life goes on!

[lupus-support1 Administrator]

My advice would be to contact Prof Hunt as to what she means.

There is Systemic Lupus Erythematosus; Discoid lupus, which affects the skin; lupus variant conditions.

If she has written to your GP, you could ask for details. If she has ordered more tests, ask what these tests are about.

I hope you feel better soon.

With good wishes,

Ros

[WendyWoo50 in reply to lupus-support1]

Yes, ask for a copy of Prof Hunts letter to ur GP. If it’s not clear after reading it then phone. It’s your health and u need to be in control good luck 💋

[HollyHeski Administrator]

Hi, I read on my one of my letters, quite a few years ago that I had Lupus like cerebral APSs, triple positive, this was by Prof Hunt, I was so relieved to get a diagnoses that I never looked into the exact words.

Later on I was diagnosed with sjogrens, which a lot of symptoms were related.

Prof Hunt in my experience wants her patients to understand their own health issues, so if your appointment letter doesn't explain, write to her asking her to elaborate, she won't mind.

By the way I also suffer from bad psoriasis, not on my face, I have found a sun lamp has helped, or tanning in the sun with good sun cream has healed it. Not helpful in the winter though!!

[Greenmil3 in reply to HollyHeski]

Holly I try to get into the sun whenever I can but think I may go to the GP as I also need to arrange venous blood checks of my coagucheck machine. So hoping he can suggest a better cream or tablet maybe as it is really disfiguring and painful. But I will wait to see what Professor Hunts letter says first.

[HollyHeski Administrator in reply to Greenmil3]

Go to GP as soon as you can, as yes there may be a better cream, the only one I can say helped me was isobel gel, prescribed for my father in law for his bed sores LOL, I will try anything when it flares so I understand. And yes I have scarring but not as bad as painful flare.

[MaryF Administrator]

One of my sons, who has Hughes Syndrome/APS has also described with this, he hopes ask more about it at his up and coming appointment, but I do know that test results can come and go, and sero negative Lupus has been noted in the past, my son definitely according to Prof Hughes has some features of Lupus. MaryF

[Greenmil3 in reply to MaryF]

Mary thanks for that I’m going to wait to see what Prof Hunt’s letter says then if there is not enough information I will drop her secretary an email for Prof Hunt.

[MaryF Administrator in reply to Greenmil3]

Sometimes I think it can be because of certain drugs, however in my son's case, he appears to have certain features of Lupus, not related to any drugs he is on. MaryF

[Greenmil3 in reply to MaryF]

Mary I am just on Warfarin, Amatryptaline, pregablin, Hydroxychloroquine, and codeine so don’t think it’s drug related (sorry for spellings and I think there is another drug!)

[HollyHeski Administrator in reply to Greenmil3]

I was prescribed Hydroxychloroquine because of my 'lupus like' symptoms. Im still on it now.

Seems you have your questions ready xx

[Jumper99]

I have APS but am also diagnosed as having a ‘lupus-like’ illness. This means that it looks like lupus and acts like lupus but my blood tests are negative. I was also prescribed hydroxychloroquine but I am now intolerant of it. Xx

[Sjnott68]

Hi I was tested positive for Lupus Anticoaglant and Thrombophillia , which means i am very prone to blood clots. Four years ago blood clots killed all of my inetestines , which left me on TPN and two stomas. I have nt ate or drank anything since . I have Psoriasis everywhere, which is a pain in the butt.

[Hidden]

Hello one of the antibodies has the word lupus in it but my hematologist said it's confusing because it does not mean you have lupus... I am also triple positive . I hope you get your answers soon I would contact her and get that all straightened out take care😊

[Lure2]

One of the three antibodies they cheque for a diagnose of APS is called Lupus Anticoagulant. If that one is positive twice, that does not mean you have got Lupus (SLE), but Antiphospholipidsyndrome. Very confucing!

[Greenmil3 in reply to Lure2]

Lure I am fully aware of that thanks but Professor Hunt said I had Lupus Like Syndrome so not SLE but just the same symptoms