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Thread: New to site, not to Lupus

  1. #11
    Join Date
    May 2010
    Thanked 312 Times in 251 Posts


    While the notes from the transplant people would bring the memory of my brother's death "front and center" all over again, I think it actually helps in the healing process, just from our perspective. Then you start to think of the other peoples' families that were helped, and it *really* brings you up.

    A "post" is one person's response, or question, when you click on the submit ("Post Quick Reply") button. A "thread" is a series of posts, like a "thought thread", from everyone who responds to the "original poster" (you, in this particular thread). A "forum" is a set of similar "threads" grouped together, such as "New Members - Introduce Yourself" or "Lauri's Lounge". The term "forum" is sometimes used to designate a bunch of "forums" put together, and can also be known as a "board". There will be a test on all this Monday morning... tic |;^)

    The easiest thing to do to do a new post, is to just use "Lauri's Lounge" initially. If you post something that might be deemed more appropriate for another section (forum), the moderators can move it easily enough (I think... lol - I'm not sure of the board's tools). You have to be in a forum, and use the "Post New Thread" button (near the top of the page, upper left) to start your own new "thread". If you "Reply To Thread" near the top or bottom of someone else's thread, oftentimes your question will just get "buried" in the thread, since most of the members are paying more attention to the original poster's query (naturally). Folks just don't "see" your question. Which is why you want to start your own thread to ask questions. The hard part for me is trying to come up with a "title" for the thread... |;^)

    I am relatively familiar with plaquenil. I was on it for 3 weeks myself, and was just beginning to see signs of good improvement with mouth sores, joint swelling, etc., when I "reacted" to something, so I've now been off almost all of my meds for a week now, and some of the "usual suspects" in my medicine cabinet for almost 3 weeks, including the plaquenil. I'd been previously diagnosed with lupus (again) this year, rheumatoid arthritis (the first suspect indentified) in 1991, Hashimoto's thyroiditis, and string of other "secondary" things, such as sjogren's, renaud's, etc. over the years. The Hashimoto's could probably also be considered a secondary, since it's an autoimmune issue too. A person goes hypothyroid with it, and it's found with blood tests. A person shows up with certain antibodies in their blood for the diagnosis. Much easier to find than lupus, which is a process of elimination for some of us. As to "digesting myself", that also shows up in your blood, where there's certain enzymes in your blood from your digestion system. Something in me triggered an autoimmune response that attacked mostly my skin, but the liver is involved also, most probably just from being the blood's "filter", and can't keep up with all the stuff being thrown at it right now.

    Wow! I sure "talk" alot, eh?... |;^) - (too much coffee)
    Last edited by jmail; 08-09-2012 at 08:11 AM. Reason: My gosh, who taught me to spell?...
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

  2. The Following 2 Users Say Thank You to jmail For This Useful Post:

    rob (08-09-2012), steve.b (08-10-2012)

  3. #12
    Join Date
    Mar 2009
    Dallas, Tx
    Thanked 418 Times in 343 Posts


    Quote Originally Posted by LindaJ View Post
    I am curious to which medicines you have been taking? Did you also start with prednisone 'back in the day'. I say this because you are close in age to me. Have you had Lupus long? thankyou for you welcome.
    Hi Linda,

    I was diagnosed a little over five years ago, when I was 51. My rheumy put me on Plaquenil first, took it for 8 month and it didn't help me at all. After that it was Mobic ( NSAIDS), Flexeril ( muscle relaxer) and steriod shot ( when I was in a flare), for about 3 years, nothing really helped, I was in alot of pain.
    He finally started me on MTX, first the pills, then the shots and finally my pain was under control, UNTIL I had high liver enzymes and he took me off the MTX. Even after being off the MTX for weeks, my liver enzymes were still very high.
    I had to have a liver boipsy and found out, that I have Autoimmune Hepatitis, with other words, the lupus is attacking the liver. Now I have been off most meds, except for Mobic, Flexeril and prednisone.
    Hopefully my liver will recover and I can go back on the MTX.
    I have also been diagnosed with RA and Sjogrens.

    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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