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Thread: lupus down under

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    Default lupus down under

    I was diagnosed many years ago as having ankylosing spondylytis (arthritis of the spine) as well as having DLE diagnosed from biopsy of face lesion.
    For a long time this has bothered me as the AS was the major problem but did not fit the weird symptons I have been getting and I believed that it was SLE, but because I was Male I fitted into the medical square box by having DLE and AS.
    Through my ENT specialist this has now been upgraded to SLE because I had lost my sense of smell and again by biopsy, this organ was being attacked by LUPUS.
    I found this site, which brought tears to my eyes when i read the post on brain fog as i could relate to all of it, especially the part about the wrong words turning up at the wrong time.
    Yes again I am male and yes it is hard talking about a "girlie" disease, but with all that I have gone through thats the least of my worries, but all the same please be gentle with me. I also had an MI when I was 44, which again I like to think that was caused by this problem as well.
    Hope to hear from you all, and hope that I can offer some good input to this site.
    Rat (Phil)
    Rat from oz

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    Hey Rat how ya doin dont feel alone your not the only male with this crud and certainly not the only aussie, when you say MI do you mean infarction??? if so what were you symptoms prior to that, i also had one and was just wondering, wlecome to the forums, there are a couple of nice aussies in here,

    Terry
    Fair Oaks California

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    Hello Rat :lol:
    Please know that you are not alone as the only male with this disease. Most people think of lupus as a disease of women of childbearing age (and with good reason: 90% of lupus patients between the ages of 15 and 45 are women). However, after the age of 50 (approximately the age of the onset of menopause) the percentage of women with lupus falls to 75% and the percentage of men with the disease rises to 25%.
    The role of sex hormones in the development and clinical expression of lupus is complex. For instance, flares in women may be influenced by their hormonal status; one example is that pregnancy can trigger a flare.
    Simply put, two broad types of sex hormones exist. Estrogens are typically considered the "female hormones," and androgens are considered to be the "male hormones." Both types are produced in both sexes. However, estrogens-in addition to their role in the development of secondary sex characteristics (i.e., facial hair in males or breast development in females)-may encourage autoimmune disorders, while androgens may be protective instead. Some studies have noted lower levels of a specific androgen, testosterone, in some men with lupus. Men with lupus, however, are in no way less masculine than men without lupus, and sexual activity, potency, and fertility in men with lupus does not differ from men without lupus.
    A study on Lupus in men found that most men affected with this disease present with the following clinical features:
    * Pleurisy (inflammation of the sac around the lungs)
    * Renal (kidney) disease - Thrombocytopenia
    * Renal failure - Seizures
    * Discoid lupus (reddish, scaly skin), Subacute cutaneous lupus (skin lesions)
    * Hemolytic anemia (from the destruction of red blood cells) Lupus anticoagulant (can promote abnormal blood clotting)
    Seizures

    In one study, it was found that men with Lupus had an increased frequency of seizures, immune-mediated anemia, and lupus anticoagulant (which may lead to clotting problems), but a lower frequency of Sjogren's disease. Also, the study found that men generally had a more severe disease than women. Men with lupus face a unique challenge. It may be difficult for them to discuss a disease that so many people think occurs only in women. Because there are fewer men with systemic lupus, they have a very difficult time meeting other men with the disease. This may prevent them from gaining the benefits of mutual support. While many of our female patients are interested in meeting any other people with lupus, men usually about or want to talk to other men with the disease.
    Understanding this, we have included a "Men's Forum" here on this site so that men with the disease can talk to and support one another!

    However you choose to reach out, we will be here for you! Our moderator, St. James, has been very ill and we are all praying for his recovery, otherwise he would have been here to greet you just as Teroid has done. There are other male members of this family, so I hope that you are able to find someone that you can connect with and who will be able to share their experiences, as a man with Lupus, with you.
    In the meantime - welcome to our family where you are never alone and always welcome and where someone is always here to provide support, information, comfort and understanding!

    Peace and Blessings
    Saysusie

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    Welcome New Friend,

    Reaching out is part of getting back up again. You have found THE BEST possible support system in We Have Lupus; the owners/administrators and all the guests have been exceptionally wonderful in caring, sharing and understanding when the rest of the world looks at you with that "you look normal" expression on their face.

    Gentle, we can be....caring; always....understanding, no doubt. You're in safe arms with us.

    Stay plugged in, there are WONDERFUL men participating in this "family"; I noticed Teriod introduced himself....there are others as well.....(having a brain fog moment....right now....smile)

    It's nice to see you've stepped inside our world; we hope that you will find comfort, encouragement....and yep...we even laugh once in awhile. Well, actually most of us do.

    Thanks for stopping in....please stay connected!!

    Much love,
    Browneyedgirl
    "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown

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    Hi Rat!

    Welcome to the Forum! I'm really glad that you found us!

    Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

    Keep well!

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    Mate how you going,
    when they said you had dle they took the biopsy, did you have any bloods come back abnormal? how many years do you yhink it has taken to change from dle to sle? and what doctors to you go to around brisbane?

    thank you
    shane

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    Default Thanks Teroid

    Yes you are correct it was an infarct.
    Lead up 2 years of constant headaches (migrain size) affect eyes felt sick etc
    Feeling short tempered.
    Day before off food felt generally run down.
    Ist was early in morning bad indigestion back pain, had a smoke and a coffee
    Symptoms went away.
    Driving mid morning realised that it wasnt indigestion, but still in denial, told myself it cant be, got to a point that I could not drive any further and at the same time finally got 2 bars on the mobile and called an ambulance.
    Hope this helps you somewhat. If some one else reads this and does not have the denial I had and goes straight to a hospital, will save a lot of damage to their heart, which cannot be fixed in this life.
    Cheers Phil
    Rat from oz

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    ive been there done that and dont want to go back, i went to the hospital several times prior and they could never find anything wrong, turns out it was caused by a coagulant factor caused by lupus, after that all the symptoms went away, thank god
    Fair Oaks California

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    Welcome Rat,

    Glad you feel comfortable enough to reach out to us. You have found a great cyber family- if someone doesn't know the answer, then another person will find it and they come will alot of cyber understanding, hugs and love.

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    Hi there Rat,
    I am the wife of one male with SLE, which has developed from DLE in the last two years. On looking back now, we realise that he has had DLE for many years, but went undiagnosed. He had a rash on his legs in the hot summers that we experience here in Australia and when he asked the Dr. about it was told that it was just sunspots and told to put some Lanolin on them. This used to burn them anyway.
    My OH did notice that they were worse in the summer as well. He is an asthmatic as well and during harvest and sometimes at other times of the year, he had to take Prednisone for this problem, so from what we, that is his current GP and the two of us worked out, it kept the whole thing from blowing out.
    Two years ago, he had to have a biopsy for cancer and was told not to take the prednisone, so stopped doing so. After the biopsy, he developed a Staph infection, as well as bad prostatitus and finally, 7 months after the initial diagnosis, he had a major operation. While he was in hospital, his sister, who had raised him, died suddenly, and other things heaped on top of him as well, and he really didn't get well from the time of the initial biopsy.
    I did mention to two Drs, that maybe he had SLE, but one ducked and the other flatly said no. Finally, after doing quite a bit of research and also
    being in touch with another Dr online, and having more blood tests, his GP agreed .
    He has his good days and his bad ones and that is the way that it goes. We take each day as it comes.
    Our youngest son also has SLE, which cost him his career in the Army, as he has a problem with blood clots , which made him unable to be deployed by air.
    However, he is now a farm manager with Bartters chickens in WA.

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