whisperit2 years ago

Speaking as a man with Undifferentiated Connective Tissue Disease - a systemic autoimmune condition closely related to lupus - I can assure your neurologist that being male isn't a disqualifier! My initial symptoms were first diagnosed as heart failure, but were in fact due to lung inflammation. My ANA was at the top of the scale.

Although some neurologists are clued up about autoimmunity, a significant number are not at all well informed. So it doesn't really surprise me to hear yours wasn't. A rheumy is definitely the way to go.

Meanwhile, if you go to the "Home" page here, you'll see, on the right hand side of the page, a link to a variety of LUK leaflets, which explain a load of stuff. Here's the one on Lupus and Men.

lupusuk.org.uk/wp-content/u...

Let us know how you get on x

Northerner1 in reply to whisperit2 years ago

Thanks for your reply & for the link... to be honest, I was surprised when he got out his phone and started Googling the info! He made out that men simply didn’t get it, so seems like I need to loop back to my GP and get a referral to a rheumatologist then

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whisperit in reply to Northerner12 years ago

The neurologist will have written a letter for your GP after your consult. Do get a copy of that letter. It will give you something concrete to work from, and you'll see what misunderstandings your neuro may be perpetrating - but I would expect it to recommend a rheumatology referral in any case.

Assuming that goes in, do check to find out what the waiting time is. If it's intolerably long, you might want to consider a private opinion in the first instance (cost about £250+). If they find a systemic autoimmune condition, you should then find it easy to get onto a NHS consultant's caseload. Bear in mind that lupus/SLE isn't the only systemic auto immune condition. Things like UCTD, Sjogrens etc are also significant diagnoses.

Hope it goes well x

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baba in reply to whisperit2 years ago

whisperit I hope you are well.

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whisperit in reply to baba2 years ago

thank you. I'm OK, and migraines a little less frequent now. Hope you're OK too x

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Jmiller6232 years ago

Uuuuuuum. Positive ANA with signs of an autoimmune disorder deserves a more in depth work up. Neurology is notoriously awful when it comes to picking up neuro problems in lupus.... at least in my experience.

I’d set up an appt with a rheumatologist. They’ll be better able to help you, get appropriate labs and address your current symptoms as in line with lupus like or some other connective tissue disease.

I do think males get it a bit milder than females and sometimes males and females present differently in general. Although, studies suggest men have more severe disease. Sometimes I wonder if this is because y’all seek out diagnosis later in its course. I would keep pushing if I were you, especially if it is affecting your work or quality of life.

Hope this helps. Sorry you were dismissed. That never feels good. Sending hugs your way. ❤️xx

Northerner1 in reply to Jmiller6232 years ago

Thank you ... I will. Plan to speak to the GP today to get referred. It has had an impact on me over the past five months so would just like answers.

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Insomniacette2 years ago

Lupus in men is real. It doesn't occur as often as it does in women but it definitely happens! Definitely worth a trip to the rheumy to get yourself checked out. Don't let them fob you off or dismiss you with sexist nonsense - you're entitled to get to the bottom of your blood results and hopefully a rheumy will help you get there.

Northerner1 in reply to Insomniacette2 years ago

Thank-you. Will look to get referred to a rheumatologist. The whole experience was awful and left me feeling down and a tad embarrassed to be honest. However it’s a new day so will get back to the GP

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stillsdisease in reply to Northerner12 years ago

Welcome and sympathy! You will have seen a host of stories on this site of the trials to get fair and decent treatment. As you are male I suspect it will be equally if not worse for you to achieve this and indeed you experienced discrimination at the first hurdle! It’s a disgrace, may I suggest you start keeping detailed notes and files right from the start in case you need to escalate your situation. It can’t hurt. My GP also Google’s during my rare appointments and turns the screen for me to read it!

Good luck.

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Northerner1 in reply to stillsdisease2 years ago

Thank you... I’ve noted everything down as I’ve been struggling with concentration. I had even considered writing a complaint but not sure I’ve the energy for it. To be fair to my GP, when he rung to tell me about the positive blood result he was honest and said it was beyond his area of expertise so that’s why neurology or rheumatology would be best placed to explain. I completely get that from the GP - I’d just expected the neurologist to have come across this result before as a specialist.

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Northerner12 years ago

Thank you, I’ve read through some of the leaflets now and that’s helped.

It is the first time I’ve seen a doc and they’ve had to Google results. He literally read out the first result (from medicineplus.gov) that listed Lupus out first as the reason for a positive test 🤷‍♂️ But because I am man he dismissed it, saying the test result wasn’t important, and wanted to focus on if I was stressed at work (which I’m not) or I’d lost someone (which I haven’t).

Without out any examination (I didn’t even take my mask off so he didn’t even see/check the area of my face where I’ve a constant burning sensation) he just thought CFS and fibromyalgia were more likely and discharged me back to the GP

Admiral592 years ago

Hi wisperit and welcome to the forum.I too am a man and have some of the signs ie, aches pain in joints dry eyes constant headaches daily and hair loss on my legs , I went to my rheumatologist who almost dismissed sle, I think because I'm a man and I have positive double strand DNA and ds dna and used this forum for help which they did , but I am still fighting the system and ignorance. I waiting to have xrays and more bloods taken I have now contacted the London lupus centre for help, so you are not alone keep on this forum they are a mind of information sorry I cant help but just to let you know I'm in the same boat.

Good luck.

Northerner1 in reply to Admiral592 years ago

Thank you, your experiences are really useful. This forum has been an eye opener and it helps to know others are in the same boats (although it is sad at the same time!).Good luck with your fight!

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LloydE2 years ago

I have Lupus Nephritis, it is rarer in men 9 to 1 ratio (I think) but men can still get it.

BeeManShrop2 years ago

Hi Northerner Welcome, sorry to hear about your illness. I am a man that does not have Lupus, but my wife definitely does. Could I suggest you look up the 11 criteria to diagnose lupus. One of these criteria is +ve ANA but this is a very generic test that can lead to a number of different possibilities. It does show that something amiss is going on though and further investigation is required. ANA test is at the top of the tree, as it were, and below it there are a number of more specific antibody tests that will lead to (when combined with other tests and your clinical symptoms (e.g. rash, painful joints, fatigue etc) a diagnosis. It is the test for dsDNA antibodies that is more specific to lupus. (which does take around 2 weeks before the results are returned). These tests are normally called for by a rheumy or nephrologist (kidney specialist). The link below shows the cascade or flow diagram. According to the lupus encyclopedia (a really good book!!) --about 90% of lupus patients are women but 1% are men so do not be discouraged. You will find that lupus is commonly not understood by many medics or the public in general. At our clinic even the specialist nurses on the helpdesk (who are excellent re rheumatoid arthritis) know little when it comes to lupus -- they quickly say "Oh that is lupus -- you will have to speak to the specialist" -- trouble is -- getting to speak to "the specialist" is akin to asking to speak to Father Christmas but that is our problem.

Hoping this helps, just a little. Best of luck with your journey.

questdiagnostics.com/hcp/in...

Northerner1 in reply to BeeManShrop2 years ago

Thanks for sharing the link BeeManShrop - that is really handy and does help. I guess I need to find out what else the bloods have shown (if anything) beyond the initial ANA.

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tree_shadow2 years ago

I have lupus and I am a man.

tree_shadow in reply to tree_shadow2 years ago

I was diagnosed when I was in hospital and at a point, that unless they diagnosed me correctly I would probably have died due to what Lupus was doing to multiple organs in my system. I had rheumatology, infection diseases, respiratory and haematology teams all involved in the diagnosis. It took a weeks of tests to have a definitive diagnosis of Lupus for me, but once diagnosed I was stabilised and have not been in hospital since 2018.

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Northerner1 in reply to tree_shadow2 years ago

Thanks for the reply tree_shadow - it sounds awful & glad you’ve avoided hospital for three years now.

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Krock12 years ago

Northerner1, I am a 69 year old male with mixed connective tissue disease. I was diagnosed 5 years ago from ANA values. I was started on hydroxychloroquine and still take a maintenance dose. I get flare ups mainly in my muscles and tendons. I try to stay active and find stretching exercises help get me back on track and stay on track.

While the ANA is useful you should see a rheumatologist to get a more thorough review. Best

Northerner1 in reply to Krock12 years ago

Thank you Krock1 - I hope you are doing ok now. My next step is definitely to see a rheumatologist. The info (and support) on here has been invaluable and has helped me as I was pretty despondent after seeing the neurologist

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johncarver2 years ago

Hi I’m a male I have lupus mine is aps got my diagnosed when I had blood clots so it is had getting anything done been a male my lupus aps give me foot ulcers for the last 4 years only just am I getting help from gp and I have the butterfly rash on face hope you get sorted

livetorun2 years ago

i am also a man and was initially diagnosed with lupus but later that was changed by my specialist to MCTD so you need to get a second opinion

Frosty19602 years ago

Plenty men have lupus admittedly not as many as women with the condition. I have had cutaneous lupus since 2001 which has affected me more over the years. Don't be put off by one ignorant consultant ask for appointment with different consultant, hopefully get better looked after hope you get to bottom of problems and get some treatment.

SurferGuy2 years ago

Hi Northerner1,

I've read all the excellent responses you've had here and no doubt they've shown just how possible it is for men to have Lupus.

I wanted to share with you my first post (below) when I joined this forum, which shows just how easily Lupus can be misdiagnosed for numerous other diseases. The flip side to NOT being diagnosed with Lupus is to be diagnosed WITH Lupus when in fact it's something else. An ex girl friend of mine went through this when she gave birth to her first child. Because Lupus is a beast with so many faces, it's every so easy to misdiagnose.

I hope you've managed to speak to someone to arrange an appointment with a rheumatologist. They should be able to give you a much better assessment.

"Hi All,

I’ve just joined this forum today whilst carrying out research for a documentary I’m producing on Lupus. I will give more information on another specific Post, but for now I‘d like to introduce myself.

Firstly, I hope everyone is keeping well at this difficult time for all – and more so for folk like us with serious underlying conditions – and I hope we all have managed so far to steer clear of this dreaded lurgy.

I’m a 44 years old male from the UK. I was diagnosed with Lupus in July 2008. Like most, to say I was distraught and scared witless is an understatement. I was worried for myself, but more than this, I was worried for my wife and mum. If it was just me alone, I would’ve been absolutely fine with it and would have just gone with the flow.

Prior to diagnosis, I was an absolutely fit and healthy guy. Very rarely sick. I was playing football twice a week – sometimes twice on the same day, afternoon with my work colleagues, then evening with my friends. I went to the gym twice a week. Ran twice a week. Surfed a couple of times a year (wasn’t very good at it… and still not very good at it now). And a few other sports thrown in in between.

But all of this ground to a halt soon after returning from a ski trip. After returning I felt a mild pain in my left knee. At first I thought it might have been a mild strain from football, but couldn’t think how I could have got it. Then I got the morning pains and fatigue. Couldn’t bend my knees or fingers, walking up and down the stairs became difficult etc.

I was sent to a rheumatologist who at first diagnosed it as arthritis. After initially being distraught, I thought “OK! I can live with this”. But soon after I received a letter telling me it was SLE. I’d never heard of this so done a Google search. And that was it! I was scared witless. Distraught.

I was put on the usual base line drug of Hydroxychloroquine. Then a couple of years later I was on prednisolone.

I had no organ involvement until 2017 when all of a sudden my kidneys were attacked. I was put on a high dose of steroids and mycophenolate. I was also asked if I wanted to participate in a trial for Belimumab (Benlysta). I’d read of this drug and the feedback seemed very positive, so I jumped at this chance.

As with most trials, the only downside was that I could be trialling the REAL thing OR just a PLACEBO! But I was up for it. Here’s a link from a UK forum I’m part of of my journey on this trial. Warning! It’s a lengthy read! thelupussite.com/forum/inde...

I’m currently feeling a lot better than I was a few years ago, but then I’m also on very high doses of all my medication!"

Northerner1 in reply to SurferGuy2 years ago

Thanks SurferGuy - really appreciate your comments. Your first post certainly sounds similar to my situation - was active, gym, sport & walking, then as opposed to knee pain I suffered calf pain (which I assumed was sport or walking related) followed by the fatigue.

I’ve currently complained re: the neurologist I saw after a chance conversation with someone else who’d had the same issues with the same Dr. I’m just waiting to hear back from the private hospital regarding this and my request to have my notes reviewed by someone else.

I understand Lupus is just one of the possibilities but was dismayed/surprised by the neurologist’s actions and dismissive nature.

I hope you are doing well now

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SurferGuy2 years ago

Anytime Northerner1. And please keep us updated on how you get along.