Results 1 to 8 of 8

Thread: Hello

  1. #1
    Join Date
    Jun 2008
    Location
    Rochester New York
    Posts
    6
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default Hello

    I am new to this particular board. Just wanted to introduce myself. I have had SLE--probably all my life according to docs-but diagnosed suddenly and unexpectedly in 2005. It's been an uphill battle to say the least as you all probably know.

    I'm going to look around the site to see the best board to put my question on!!!

  2. #2
    Join Date
    Jun 2008
    Posts
    915
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi and welcome to the forum. I too have SLE and the doctors believe that I have had it most of my life as well. I did not get diagnosed until I was 36 years old, but the doctor believes that I have had it since the age of 5 based on my medical history. I did not get severe flares until after I caught the Chickenpox at the age of 35. After I got over that mess, my health took a serious nose dive to say the least and I was diagnosed with Lupus. There are a lot of folks that post here that have Lupus and they are great.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  3. #3
    Join Date
    Jun 2008
    Posts
    20
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Well welcome to our family nice to meet you I only had a positive Ana test and have an apt to see a rheumatologist july 24th which feels like years away I am scared of dying I don't understand it

  4. #4
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,721
    Blog Entries
    9
    Thanks
    1,578
    Thanked 919 Times in 582 Posts

    Default

    Welcome Itcbitc;
    Most of us have discovered that we were suffering from symptoms of Lupus for many years before we were diagnosed. I look back on my teenage years and can now put a name to the various aches, pains, rashes, etc. that I suffered with and that no one knew what the cause was. You are not alone in that area.
    We are here to help you to understand this disease, to answer your questions, to provide you with support and comfort, and to give you a safe place to talk about any issues you may have as a result of Lupus. Welcome to our family.

    Scarednewmom;
    Do not become overly stressed about dying. With the advent of new medications, making appropriate lifestyle changes, and taking necessary precautions, it is quite possible to live a relatively normal life with Lupus and to do so for many, many years. I was diagnosed with Lupus in 1985 and I have been downgraded to mild Lupus since 1992. It is now 2008 and I am in relatively good health with no life threatening issues at all! Having Lupus is NOT a death sentence. It is a mandatory life altering illness, but altering your life is no where near dying. Please do not cause yourself undue stress about this issue...ok?

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

  5. #5
    Join Date
    Jun 2008
    Posts
    915
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi Scaredwoman,

    My name is Kathy. Like Saysuie, I have had SLE for many many years. They have a lot of good medications now and Lupus is not considered an automatic death sentence. I know when I first got diagnosed, I was scared too. My Lupus is pretty much under control with medication and I know that they can help you too. Please be calm and don't get stressed out. You can live to old age with this illness. Yes it is a life long chronic illness, but it is not a death sentence. God Bless.

    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  6. #6
    Join Date
    Jun 2008
    Location
    Rochester New York
    Posts
    6
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Thanks for the welcome. I am just having a super rough time right now. This might be a little long winded but here goes. I lost both parents very close to one another which is what the stressor was that got me flaring. It has been really bad. Kidney's spilling protein, muscle weakness, fatigue, brain fog, etc.

    I have been on plaquenil of course. and then Methotrexate--but then I got pneumonia and they took me off it. So then steriods. But now I have a bone infarct so they won't let me take steroids anymore.

    The way they found out about the bone infarct was that I fell down and blew out my previously reconstructed ACL. Did the MRI and found the infarct as well.

    Now I have to have surgery on July 30th so they won't start the methotrexate. Have to wait to heal first.

    I'm going through rigorous PT and will be in PT for another 6 to 12 months after the surgery.

    I have to decide between a cadaver graft (yuk) and taking part of a tendon from my good leg to put in my bad leg. (tendon from bad leg was already harvested at the time of the original surgery.)

    I'm flaring horribly and cannot believe that my treatment is limited to plaquenil until after the surgery. I understand it, but I am in disbelief at how horrible my luck is. :cry:

  7. #7
    Join Date
    Jun 2008
    Location
    Quincy Ma
    Posts
    505
    Thanks
    2
    Thanked 15 Times in 14 Posts

    Default

    Oh my gosh - itcbitc,
    That is, for sure, lousy luck. I am not an expert on any of the meds, but Ive heard of Cellcept? Or maybe that is for kidney problems only...Not sure. Thats horrible that plaquenil is the only thing you can take...
    Im sure they will have you on pain meds, however, after the surgery and Im sure they will help with the pain until you can go back on something else....
    I wish you the best...welcome again and keep posting. This is a wonderful site - informative, comforting and safe....
    You are in my prayers -
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

  8. #8
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,721
    Blog Entries
    9
    Thanks
    1,578
    Thanked 919 Times in 582 Posts

    Default

    Immunosuppressant drugs, like Methotrexate, can make you more vulnerable to infection. Having a major surgery in and of itself opens you up to possible infection. You DO NOT want to be on any immunosuppressant drugs prior to your surgery. Prednisone also has some immunosuppressant properties. So, your doctors are doing what is correct and what is the safest thing for you.
    Many pain medications have properties that will thin your blood. This is also something that you REALLY DO NOT want to happen prior to surgery. At best, bleeding during surgery is a very real concern and must be controlled. If you are on a medication that could thin your blood, your bleeding during surgery could become life threatening. So, again, your doctors are doing what is correct and what is the safest thing for you.
    As Lauri mentioned, as soon as your surgery is over and your post-op looks good, you will be prescribed everything that you need. Until then, I'm sorry to say that you will have to suffer the lack of meds. :cry: It is for your safety.
    I wish you the very best on your surgery and that your rehab and recovery are successful.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •