men and lupus?

How often do men get lupus? My Dad supposedly had fibro... He died with a horrible lung thing and couldn't breath, and they thought asbestos lungs...It was his Mum had the bad rhumetoid arthritis...PS/he also had malaria in ww 2..Maybe he was on a drug that disguised lupus...Just a thinking thought...His sister had weird stuff too, and only had 1 kidney...You know, they wouldn't routinely check for Lupus, cause I was one suggested to Gp that my thing sounded autoimmune...Also when I started having thyroid stuff..i suggested they check my thyroid...Just wondering if Dad could have had lupus..?

15 Replies

  • Not as often as women but they do and we have members here that have it. With your knowledge of your own symptoms, look back and see whether your Dad had similar ones. It isn't easily diagnosed today, let alone when your Dad was ill, so I wouldn't be surprised if he went undiagnosed or misdiagnosed.

    My Dad died of liver cancer. All his symptoms were very vague for a long time, now I'm thinking whether he could have had autoimmune hepatitis that went untreated - I can't explain why I have lupus otherwise, no one in my family has had any autoimmunity issues whatsoever.

  • My dad had colon cancer ten years before his lung thing, but they said he beat it,...who knows, he really didn't like going to the doctor...He never missed a day of work in his life, and the colon cancer thing happened in retirement years.. He took early retirement at 60, and cancer doesn't happen over night, and his operation came at 65...But the fibro thing seem to happen fast, and then lung thing, and not being able to breath....His Dad had a lung thing too, but they said he drove London buses, and was mustard gassed, and a big smoker...I know his wife had the RA...that's the only autoimmune thing I can trace...My mom had no thyroid issues like me, but she was a poor eater, and had a b12 deficiency....

  • Lupus /autoimmune diseases are very common in Asians / African populations. I'm not sure if there are studies as to how common SLE in men. There are so many SLE genes and that's certainly possible. Although some SLE genes may affect only females, there are other SLE genes which affect men as well. In my case, I'm quite sure my Dad had SLE.

  • Im really wondering about my Dad too now ,maybe he had it...Ive got no other nationality like Asian or African,..or even Native Indian (Im in Canada)....British as far back as you can go(maybe some Welsh, French, even German way back there), and because Dad's family is Yorkshire, could be Vikking

    Mom too is British, from South London...I sat with pen and paper one night trying to think about what I know about relatives, but comes back to Dads Mom with RA, and she had it really bad. I think my one Auntie with kidney issues is suspicious too...

  • Interesting. Come to think of it, I have known some men who got systemic autoimmune conditions. Do you sometimes notice that men would not want to be seeking much help (by only resorting to symptomatic relief)? SLE is known to be a genetic driven illness. I cannot say from which parent I had inherited "bad" SLE genes from. I probably got these from both parents. These are passed down from one generation to another as well as good "protective" genes. We may not have the exactly the same disease pattern as our parents / relatives, they are our genetic models in a real life.

  • and the goofy rhumetologist said just 5% hereditary the lupus thing...

  • I have Lupus and my brother has had Guillime father had Ankolysing Spondilosis....(never quite sure how you spell it)....and with hindsight I feel he had many of the similar problems I have with Fibromyalgia. Dad also had emphysema....from Ww2....being subjected to gas for training he I think autoimmune issues are connected to genetics.....I think that often symptoms are very similar and in the past maybe research just wasn't fine tuned enough to distinguish one ailment from another.

  • I agree..

    Also, Ankolysing Spondilosis I can never say that one, alone spell it..

  • Hi there. As one of the men who has "it" I thought I would say hello. We are rather few and far between and usually have multiple tentative diagnoses, Fibro, RA, Lupus, psoriatic arthritis, you name it. The docs don't seem to like being too specific when dealing with auto-immune issues. Frankly I don't think that the average rheumatology registrar has much knowledge of these conditions and they are far happier dealing with 'ordinary' arthritis. It usually is a registrar you end up seeing as well rather than the boss whose name is actually on your appointment letter.

    I'm not aware of any convincing evidence that there is a genetic component to Lupus but maybe one day one will be discovered.

    My Dad served in Burma during WWII and was bright yellow when he came home because of the quinine he had to take against malaria. He died sooner than he should have really and I am convinced that it was the hard battering his body took during the war that caused many of his later health problems, kidney failure, heart attacks, etc.

    Best Wishes.


  • Yes, that's where my Dad was too, Burma...My dad said they were also sprayed with DDT over there as well, and that could not be good...

    My Dad was RAF on those big Liberator planes.. He was only 75 when he passed on.....just could not breath.

  • I personally feel that Rheumatology ought to consider offering genetic tests as part of diagnostics rather than forever checking has been known certain genetic SNPs are implicated in SLEs which shares genes with ankylospondylosis, bechet, sarcoidosis, RA etc etc..I doubt it is only registrars who are unspecific about which one you have got, the same apply to top consultants. Too many similar symptoms and clinicians aren't magicians no matter how accomplished they are. You get mixed symptoms as SNPs have overlaps. You may end up with several Autoimmune diseases which develop as we grow older. It's useful to know. Being useful as you can keep an eye on things rather than being blindsided when a new one hits you hard. Knowledge is power. Also it probably help support a diagnosis when there are uncertainties in hard to diagnose patients. In this day and age, arriving at diagnosis shouldn't take years or keep changing a diagnosis every six months should be avoided at all costs.

  • the orthopedic surgeon I saw was more interested in genetic testing...He didn't do it, but he was leaning that way.,.like with chondrocalcinosis...he says its a certain gene etc...

  • Technology is there and it shouldn't cost that much. Yes, you're right. It would be a game changer. I get to hear peeps with bechet disease are getting tested. why not SLE?

  • Hi I am another of the men with sle I have various issues with this dammed disease had firm diagnosis in 2004 but a lot has happened since I get to see the boss reumitoligist every six month .

    Take care guys g

  • This is getting interesting...hearing from the guys...Guys and Lupus...

    I forgot to say Im a girl...

    But makes me wonder even more about my Dad.

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