Lupus "Like" syndrome with APS, newly diagnosed

Hello everybody, I've mainly been posting on the Hughes Syndrome blogs, but I have been diagnosed with APS and Lupus "Like" Syndrome.

I've also been diagnosed with Pernicious anaemia and Dystonia, I've had MS for nine years.

I have just learned a little more about my maternal Uncle's medical history. He died age 50, aprox 20 years ago.

He was a fit man, played rugby and enjoyed a drink and a smoke after matches.

When he was 30 he dropped something on his tow, and had to have an amputation. He had three more episodes of gangrene in the leg until it was amputated at the hip.

He was beginning to have similar problems in his other leg.

His dr's said that his problems were smoking related; however I have told my Dr's at Tommy's and they say is is incredibly unlikely that smoking could have caused his problems at such a young age. So we can make a fair assumption he might have had APS.

Yesterday, I asked my mum what was his cause of death? She said organ failure. There was no reason why he should have had organ failure - it was assumed to have been smoking related.

So, I think, it's likely he had Lupus and APS. For him, the worst thing must have been thinking he had caused his own disease.

But, what actually is lupus "like" syndrome, might I actually have Lupus? can Lupus present mildly at first and then be diagnosed as Systemic Lupus? I was only given my diagnosis of APS and lupus like syndrome about two or maybe three months ago. Is it very early for a prognosis to be made?

My APS has been aggressive. In one year I have had an arterial clot in my leg, a near amputation at the hip resulting from a bang to my shin, Multiple PE's, recurrent thrombosis. and a TIA. The good Dr's at St Thomas' diagnosed me as having had a previous major stroke, which at the time the on call DR at my local hospital dismissed as having been "just my MS" and no treatment was given.

It's hard to differenciate between my aches and pains of MS, and aches and pains that are new in my joints. My hips hurt to weight bear (but I have been in a wheelchair since my stroke in 2012) and tying this is beginning to hurt my hands... serves me right for waffling!

Any advice would be greatly appreciated.

Thank you!

Annie x

6 Replies

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  • I've never heard of lupus like syndrome, you either have it or not. It is true that there are many shades of autoimmune diseases with symptoms that overlap with lupus but blood tests and symptom history help identifying the relevant one. Are you being tested for lupus? Nowadays it is done at the same time as testing for APS, as many times they go together. Is your MS confirm by brain and spinal cord tests? Lupus is sometimes mistaken for MS.

    You've had such a tough time lately, I hope you'll get to a clear diagnosis so you can aggressively treat it and start stabilising. Lots of luck!

  • Hi, yes, my MS was diagnosed with MRI's and spinal fluid. It's a definite diagnosis. It was when I had a recent MRI on my brain to double, triple check MS that my stroke was discovered.

    Mmm. Interesting that you've not heard of lupus like syndrome. I've been put onto Hydroxychloroquine for it. Maybe they're breaking the news to me gently?

  • It is more likely that it isn't very clear which connective tissue/autoimmune disease you have. Hydroxy will take a while to kick in (around 6-8 weeks) but if it works for you it will improve some of the autoimmune symptoms regardless of the label. I'm surprised they haven't put you on steroids as well as hydroxy, for a quicker action, but then steroids are so difficult to come off from that maybe that was a wise decision nevertheless.

    You will get to have the autoimmune disease and the APS under control soon, if treated aggressively, hopefully a better quality of life for you soon!

  • Sorry - typo. My stroke was in 2010!

  • They tend 2 use the term 'Lupus like' when u have over lapping symptoms of various autoimmune illnesses (as Purpletop has already stated!) but I've never heard of it referred 2 as an actual syndrome in itself (but considering I was diagnosed with SLE, I guess I wouldn't have). Lupus & APS (as many other Autoimmune conditions) generally do have a genetic link (although u can get drug induced lupus & such) & I think much of the time, if u're diagnosed with 1 autoimmune condition, u're far more likely 2 have at least another 1 pop up somewhere along the line, even if it is extremely mild. If u look at the symptoms of many different autoimmune conditions (especially lupus & APS) the symptoms can be very similar indeed, this is why it can sometimes 2 so difficult 2 pinpoint which particular illness u have or which is causing the specific problem. Plus don't 4get, many times u can have a 'Primary' illness (such as APS 4 example) & it can 'bring on' a 'secondary' illness (such as lupus 4 example). So I know I've kind of bambled & not really answered u're question so not actually really sure what I HAVE done lol!

    Hope things become easier 4 u soon.

  • Hi there

    I was also told by the doctors that I had a 'lupus-like' syndrome when I found out about APS at the Recurrent Miscarriage Clinic at St Mary's. I don't think it can be very clear for even the doctors to actually differentiate between the various conditions that so many of us with autoimmune disease present with. I have recently been diagnosed with Sjogrens Syndrome and the rheumatologist told me that she thought I've had Primary Sjogrens all along (I was initially diagnosed with Stills Disease/Juvenile Arthritis when I was 16 - I was subsequently told that this was almost certainly lupus as I also had liver and kidney failure at the time - then it was the 'lupus-like-syndrome' . . . and now it's Sjogrens some 30 years later!). I don't suppose it really matters what it gets called as everything gets treated symptomatically anyway and it really does seem to be all part and parcel of the same basic autoimmune problems at the end of the day. I'm so sorry to hear that you are in so much pain and discomfort and I hope you manage to find a sympathetic doctor who won't belittle your condition whatever they want to call it! x

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