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Greetings and Salutations -36yr Male w/recent diagnosis

Discussion in 'Introduce yourself' started by Gman.45, Sep 23, 2010.

  1. Gman.45

    Gman.45 Registered

    Hello everyone,

    My name is *****, I'm 36 and have lived primarily in Alberta, Canada. Until becoming very sick back in 2008, I was an instructor for a private military company (as seen on CBC and the documentary film 'Shadow Company') in Alberta and Ontario, and I've also spent a year working in Fort Mcmurray.

    Around 1999, my x-wife noticed my behaviour changing as well as the Lupus-ish rash on my face. I was also Hypoglycemic with blood scans in the .8 to 1.2 range sometimes, in addition to general malaise and "sicky" feelings. After treatment with some facial cream, I never thought much of my symptoms other than just being ill occasionally for the next 8 years.

    Then in late 2007 something really began kicking my ass. I went through nearly a dozen scopes up and down both ends, radiological follow throughs x3, and all that was found to explain my pain and stomache/Gi issues was a few polyps which turned out to be pre-cancerous, but not a seroius problem once removed. So for nearly 2.5 years I beat my head against the wall researching every type of condition that could explain my symptoms, and spent hundreds of hours waiting at walk in clinics and seeing specialists who couldn't explain any of my symptoms other than to say "you have irritable bowel syndrome..I think"...which is doctor speak for "I think there MIGHT be something possibly wrong, but I have no idea what" .

    When describing my pain I was feeling (blinding headaches, 6-7 rating abdominal and GI pain, shooting pains in hands and feet) doctors eyes would always narrow and the inevitable "I think you may be a drug seeker" talk would ensue, and I'd get a refferal to a psych doctor of some description so I could go "talk about my mental problems that are causing me to seek these pain medications". I guess being young, male, bald, and having the aggresive occupation must not have been working in my favour.

    So again, for most of late 2008 and most of 2009 I spent wallowing in misery in bed or on the couch, as my saint of a G/F stood by and worked to help us survive financially. Then right after xmas 2009 she informed me she couldn't live with a sick person anymore (I don't blame her one bit) and that she was moving on to where the grass was greener. Unable to work at least 1/2 of the days I could get motivated enough to move around (all the laying around had my 45lbs of hard worked for muscle turn into fat and add a good 30 more lbs of fat for goodmeasure) and do something, I decided to move back to where I grew up 20 years earlier, as I was convinced this would be my final year on this earth.

    Well as luck would have it my folks had some very good friends who happened to be from South Africa, and they knew a good doctor who hailed from there country that was local. This doctor listened to me more than all 6 of the previous docs I had tried did combined, and suggested I keep a log of my symptoms on a white board and bring it in to him. I had aslo gone from hypoglycemic to borderline diabetic in the last couple years, so he immediately began treating this issue for me. Well, after taking his advice and white boarding everything, I started looking at off the wall types of diseases and conditions, and for some reason Lupus kept jumping out at me. My next visit I told my doctor this, and it just happened that I had a real bad case of the Lupus face rash that day. My doc literally whacked himself on the head and said he'd give me a spot diagnosis until my ANA etc bloodwork came back that I had SLE. Well, he was right. When he told me it was 100% I burst out in laughter (he told me tears was more common, haha) as it was a huge weight off my shoulders to finally know WTH I was dealing with.

    The good news ends there, as the Prednisone I was prescribed, 100mg, which is 25 mg less than what I should be taking on the 1mg to 1kg ratio, put my blood sugar up to 36.5 in one day and nearly flatlined me for good. I spent a week in the hospital, and the nurses were absolutely superb when it came to their attitude, but somewhat lacking in their competancy. They forgot my 40mg lowered dose of Pred TWICE and were consistently late or completely inconsistent with my blood screenings and insulin injections, making it impossible for the doctor handling my case (my South African doc was away on vacation) to get an accurate and consistent baseline for trying to keep me on the Pred. So, the previous 3 years of frustration with the medical system all boiled over in a 10 minute rant, and I signed myself out of the hosptial and went home, and chucked the remainder of the Prednisone.

    I've done a lot of research on Benlysta, and one of my best friends has 2 clinics of his own in Palm Dessert, California, and the minute it's available in the USA or Canada I'm going to try it, as the other primary treatment (pred) has been rejected by my system.



    Well, that's my story in 2000 words or less, I'm very glad to have found this site and have already learned much from a couple hours of reading.

    Wishing everyone here all the best,
     
    Last edited by a moderator: Aug 14, 2018
  2. Pink Pearl

    Pink Pearl Registered

    Hi Garra, Welcome to the board.
    You have a medical history that is similar to a lot of our members. You have lucked out in finding a doctor who will listen to you. That issue is one of the hardest to find, as you found from the 6 you kicked to the curb.

    I do understand your prednisone issues. I went thru steroid psychosis and understand about being toxic to them. Not a pretty picture at all. I do hope the new med will help you. Pred is a double edged sword.....danged if you do or don't.

    You were lucky when you chucked the pred..... quick withdrawal can have serious effects on the rest of the body. Don't advise you doing something like that again. Most doctors take a dim view of unsupervised withdrawals.

    Take care and hope you are doing better.
    Sally
     
    Last edited by a moderator: Aug 14, 2018
  3. greenhaggis

    greenhaggis Registered

    Hi there and welcome

    I hope in the meantime before Benlysta is ever released (hope it eventually is successful enough to be) that you are taking other Lupus disease modifying medications such as Plaquenil.

    For now I have to dash, but take time to read more on the main site about treatment of lupus.

    As Sally says...be carefull with the pred...side effect of quick withdrawal especially from a very high doseage can be very serious, but I'm glad you survived and are here on this site to find out more!
     
    Last edited by a moderator: Aug 14, 2018
  4. lazylegs

    lazylegs Moderator

    Welcome to the site

    It was a relief for me also when I was diagnosed. Most people wouldn't understand our reaction but after searching so long for an answer you are ready to party once you get it. Not that we wanted Lupus. It's knowing what it is and being able to treat it that matters.

    Benlysta is on the fast track for approval. The last target date I saw was December 9, 2010. Usually the designer drugs are held back until you have tried a few other standard medications and they have failed. It usually boils down to your specific case, how persuasive your doctor is and your insurance company.

    Take care,
    Lazylegs
     
    Last edited by a moderator: Aug 14, 2018
  5. cally

    cally Registered

    Hi ,

    I read all of these threads with such a sad feeling, it seems so many SLE sufferers have an awful time getting diagnosed and I'm so sorry that you were one of them. I was so fortunate to get really sick really quickly which forced a diagnosis upon me! (the only good thing about being that unwell!) I'm really glad you finally have a diagnosis but I'm worried that you don't seem to be on any medication to control your SLE at the moment.

    There are a number of options which should (fingers crossed) have a more tolerable effect on your body than the pred. A relatively new (for me anyway) drug is called CellCept, it is an immunosuppresant and many people on the site have really good feedback about it. There is also Plaquenil (mentioned above) which most people who can tolerate it are on, it's like a baseline drug for keeping your SLE in check and trying to prevent organ damage...

    There are loads of other drug options out there (you can read reviews and lots more about them on the main site).

    Take care, Cally xx
     
    Last edited by a moderator: Aug 14, 2018
  6. pippa10

    pippa10 Registered

    Hi welcome to the site I looking forward to geting to know you.Pip
     
    Last edited by a moderator: Aug 14, 2018

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