CONFUSION

[MandieR]

Hi everyone

I was dx with SLE in 2001 which came as a complete shock. My 1st visit to my rheumy was shortly afterwards, but sadly there were two specialists arguing about the possibilities of me having APLS and not SLE.

GREAT HELP!!

This disagreement has carried on through the years with every few months being dx with something else.

Most of which go hand in hand with SLE.

Like fibro, RLS, Hughes Syndrome, CFS, etc.

I have recently spent a week in hospital with a hugely infected thumb which went from being painful one sat morning to becoming necrotic by Sunday morning.

Plastic surgeons wanted to amputate my thumb as poison was tracking up my arm.

Anyway. During my stay I had around 50 thousand blood tests, blood cultures etc and it was 'confirmed' that I have APLS and not SLE. even though over the years my markers for SLE have definitely been there.

Sooooo..... can anyone tell me if this or similar has happened to them and what the difference is.

Many thanks guys

Much love

Mandie

[Smudge4465]

Hi Mandie, This is particular topic is new to me too so looked it up on Wipikedia first.

Basic info but very readable. Explains a lot. I have lupus SLE 59 years old. Diagnosed in 2018.

Hope you feel at peace more now you have a factual diagnosis. Sometimes that's like 56llbs taken off your shoulders. Hope the thumb improves. Best wishes.

[Brychni]

Hi MandieIt will be because antiphospholipid antibodies in Hughes Syndrome are also a feature of lupus.

I have them but don't have clinical signs of Hughes . I have some clinical signs of lupus and connective tissue disorder plus Raynaud's but not the other 2 blood signs which are often present with lupus.

The antiphospholipid antibodies cause blood clotting so I take an aspirin every day and I'm on hydroxychloroquine for the symptoms related to lupus and connective tissue and Inflammatory arthritis which , was my original diagnosis.

Hope that helps x

[baba]

LUPUS n HUGHES links

lupusuk.org.uk/

ghicworld.org/

healthunlocked.com/hughes-s...

Blood tests for APS/HUGHES SYNDROME

1) anticardiolipin,

2) beta-2 glycoprotein I (β2GPI),

3) lupus anticoagulant.

They need to do these tests twice, 12 weeks apart, to exclude false positives.

[MandieR in reply to baba]

Thank you baba. I have been under 2 very well respected rheumatologist for the past 21 years. From the get go one has said I have SLE. the other says I have APS. I've had so many tests. Scans, profiles done over the years thst I have lost count

[baba in reply to MandieR]

sorry I didn’t know you are a warrior already

[posthinking01]

APLS and SLE are Lupus - although I stand to be corrected if I am wrong.

Can I ask if you have had thyroid blood tests at all - and are you able to get your results to put on here. I have SLE APLS but my tests went negative when I was put on thyroid hormone - the two are very connected. I am of the opinion for what it is worth that the thyroid dominates the Lupus and if you get that in order the rest is kept at bay. What drugs are you on would help too.

[MandieR]

Hi. Thank you very much for your response.This was the impression that I was under, however, I am now being corrected by the powers that be.

All I want/need to know is WHAT DO I ACTUALLY HAVE? At least then I can start to look into my own treatments etc, rather than being pumped full of meds.

My list of meds is as follow:

Gabapentin

Dihydracodeine

Warfarin

Venlafaxine

Dapsone

Paracetamol

Bisoprolol

Ramipril

Circadin

Lansoprazole

Pregabalin

Quinine

Melatonin

Thiamine

Lamotrigine

[posthinking01 in reply to MandieR]

Wow what a list of medications - I suppose you have to take one for the illness then another to stop the side effects of the previous drugs. I have Lupus ana negative now -but nephritis but went on thyroid hormones and Lupus under control - I didn't take any drugs at all because I couldn't tolerate anything - I can't of course recommend anyone else does what I did because each case is different but I went down the vitamin and mineral deficiency route - making sure I put right any deficiencies that were showing. I was so severely deficient I was told I had malnutrition.

[kimc]

If you aren't taking Hydroxychloroquinie, you probably not have SLE, because all SLE patients are general taking this medication for life.Hope you find your solutions soon.

[posthinking01 in reply to kimc]

Hi there I understand what you are saying - as whilst this was recommended for me and I did try it - I was very very ill with the first dose - unbeknown to me my thyroid was low and this drug took it down even further but ultimately my metabolism was so slow it could not clear the drug from my system or indeed any drugs at that time. Awful situation to be in especially when antibiotics were becoming a problem for me.

[Brychni]

Hi Mandie

I think you can see from the replies that there are 'crossovers' with autoimmune conditions. I also wanted a definitive answer and single diagnosis but it's not that simple and in my case the medication is the same so I have stopped fretting about it.

As I understand it Lupus can feature blood clotting from the antiphospholipid antibodies and Antiphospholipid Syndrome featuring the same antibodies is another condition on its own without the additional symptoms of lupus.

Symptoms of APS (antiphospholipid syndrome or Hughes Syndrome) are miscarriages, early stroke, headaches, whereas all of that can feature as part of lupus if those antibodies are present.

I have the antiphospholipid antibodies but not APS/Hughes but I do have some features of lupus and Raynaud's but only one of the blood features: the same antiphospholipid antibodies which BTW are also called Anti beta 2 glyco something or other!!

Over all my main symptom that got me referred to rheumatology in the first pace is joint pain. Lots of it.