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Thread: Hello Lupus Suffers,

  1. #1
    Join Date
    Dec 2010
    Thanked 0 Times in 0 Posts

    Smile Hello Lupus Suffers,

    My name is John and I was diagnosed with Systemic Lupus in year 2000. Originally, I was treated as as Arthritis suffer as Lupus can oftentimes be diddicult to diagnose. Although I have taken many medications over the years, Prednisone, Plaquenil and Actonel seems to be the only medication which my body will accept. I have taken Methotrexate but found it draines my energy.

    Over the years, I have learned that Lupus reacts differently in many people. I have also learned to be very careful with extended periods in the sun. Most of the time, I have little energy. My Lupus attacks are triggered by not enough rest, stress, long hours at work and exposure to direct sunlight. When an attack comes, I break out in a rash on my hands and on my knees an MUST rest. An increase in my Prednisone dosage and a series of Vitamin B-12 Shots do help with rest being the key factor.

    I advise anyone using Plaquenil to continually have your eyes checked as prolong usage of this medication has affected my vision. Also, I have experienced that large dosages of Prednisone can cause one to be a bit short tempered.

    One person has passed on in my family from complications caused by Lupus. Another has had a kidney replacement and now needs another.

    My best advise to anyone suffering from Lupus is to find yourself a good doctor and a good Lupus Specialist who understands this illness and work closely with them. You will llkely have bad days, but there are good days also and more importantly, with their help, you will live to enjoy this beautiful world.

    I no longer pray to God to remove Lupus from my body. Rather, I pray that he will give me the strength to live with Lupus and the side effects of my medications. God has been good to me as I am here today. If I can be of any assistance to anyone suffering from Lupus, I am here to share. I believe it is very important to share about Lupus the longer one lives with it.

  2. #2
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    Hi John and welcome to WHL! We are so glad that you found us and look forward to having you as a part of the group. It is really important for many of those just diagnosed to see people that have lived with Lupus for a long period of time so they can understand that having Lupus is not a death sentence.

    I am glad that you have found things that work for you during your flares and that you have found a way to still enjoy your life. Once again, welcome aboard and I look forward to getting to know you!

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

  3. #3
    Join Date
    Aug 2010
    West Midlands, UK
    Thanked 36 Times in 32 Posts


    Hi John,
    Welcome to the WHL as i call it the family, as so many understand the problem through suffering like we do.
    I know where your coming from i was born with it and over the years diagnosed with epilepsey, DVT, strokes and so on but now at 42yrs old, the effects of it are speeding up on me one thing which my Rheumatology doctor does'nt like, i have all the skin troubles and the sun is lethal to me within 10mins and i got mine from my dad who was never diagnosed having the problems but went eventually with cancer which runs highly in his family.
    It's lovely to offer support plus knowledge of years of having it like myself as it goes along way with alot of people, including myself because at the moment it depresses me such alot and being a manic depressive does'nt help much.

    Terri xxx

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