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Thread: Im a new member who is looking forward to chatting with people who understand!

  1. #1
    Join Date
    Aug 2014
    Thanked 0 Times in 0 Posts

    Smile Im a new member who is looking forward to chatting with people who understand!

    My name is Kathy. I am turning 50 in October of this year but most days feel much older! I live in CA. I am single but going thru the adoption process with an angel. Her name is Brookelyn and she is 14 months old. I have had her since she was 2 days old. She has become my main reason for fighting and refusing to give up. I am so frustrated with my medical care, treatment plans or lack there of. I worry about being my age and raising this adorable baby just because of my age alone and then add the uncertainty of my disease and all the damage it has already done to my body and spirit. I NEED to be around as long as possible for this little girl!
    I have the following issues: Lupus, RA, Sjogren's Syndrome, Thyroid, and now possibly Vasticulitis. Also, Dr said have a Hepapatic Liver? which I understand is Hepatitis of the liver brought on by the Lupus.
    I have had both my hips replaced while in my 30's due to degenerative arthritis.
    I was diagnosed with Lupus and RA about 7 years ago and thats where the real nightmare began.
    I have taken in the past: Predisone, oral chemo, Methotroxate, Immuran, Hydrochloriquine. None of them with any success.
    Currently am taking 15mg a day of Predisone, 137m a day Levoxathorine, 150mg a day of Wellbutrin. Also take a low dose aspirin, Vit D, and Omega 3 with fish oil.
    I have refused steroids in the past due to all the side effects but have been told have no choice now until we get my liver problem cleared up. So agreed to 6 weeks of it.
    I am frustrated and upset because with everything I have read the way to fight this disease is to hit it hard from the onset and stop as much damage as possible but I am not on anything at all now. It has been six years and have damage to Liver already. Scares me to death wondering if I am not getting treatment that I should be getting. Think it should be more aggressive.
    I have some great friends and a supportive family but they will never understand how I feel or what I go thru on a daily basis. I can't really expect them too. That is one of the reasons I am so happy to meet all of you wonderful survivors!
    Thanks so much for letting me vent and look forward to chatting with you soon!
    Hope you all have a painless and hopeful day.

  2. #2
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    Hello and Welcome To Our Family!
    You have come to the right place to be amongst people who care, who understand, and who want to help. Like you, many of us also suffer from numerous overlapping diseases. This is a common phenomenon amongst auto-immune and connective tissue diseases (unfortunately). So, we can certainly empathize with what you must deal with on a daily basis.
    I am a bit confused, however. You stated that your are currently taking Prednisone, Levaxathorine, and Wellbutrin. But then you stated that you are not taking anything. Please clarify for me. Are you, at this present time, taking any medications?
    You are correct, most doctors will aggressively treat symptoms in order to prevent them from becoming worse or from causing damage. But, there are times when doctors are loathe to prescribe some of the more potent medications due to their side effects. Especially if your symptoms are not serious. So, it happens both ways and it depends upon the symptoms and their severity and upon the particular doctor.
    However, Prednisone is one of the cornerstone medications for Lupus, especially when the liver is involved. Often, doctors will put you on a high dosage of Prednisone to stop the damage and then they will KEEP YOU ON A LOW MAINTENANCE DOSE in order to prevent further damage. As much as you may hate the drug, it is a life saving one for this disease. As such, many Lupus patients are willing to deal with the side effects in order to avoid damage to the internal organs which can lead to failure of that organ and, sometimes, death.
    Since Methotrexate did not work for you, there are other immunosuppressant drugs that you and your doctor can consider, such as: Imuran, Benlysta, Cytoxan, Rheumatres, and CellCept. Perhaps you can discuss the use of one of these alternatives with your doctor.
    I am so very glad that you joined us. Please know that we are here to help you in any way that we can and that we want you to know that you are not alone.

    Peace and Blessings
    Look For The Good and Praise It!

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