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Thread: Lupus trial medication

  1. #1
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    Default Lupus trial medication

    I was wondering if anyone ever tried a clinical trial for lupus, I was invited to try one that they are doing near me. They are sending me all the information on it and I have read all about it on line, still not sure if this is what I want to do or need to do. I keep thinking in the back of my head and I doing this because we can't afford the right medication I need or Am I doing this because it may help me. There is a lot of thinking that I have to do. Any input would be nice.
    Lea
    SLE Lupus diagnosed 8/8/11
    COPD,Raynauda's, IBS, Asthma, Sleep Apena, Amenia and Arthritis,Diabetes,Reflux TMJ, temporal arteritis
    Half dead, cripple and crazy but still above ground.
    Medication
    Novolog injections, Medrol injections, MTX injections, Dicyclomine, Plaqulin, Iron, Spreva inhaler, Advair inhaler, Albuteral inhaler, Fish Oil, Calcium, Diclofenac, Citalopram and doxcycline

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    Default

    Ive always wanted to get on one of those trials, i'm stuck in a place of constant fatigue and nausea. I was told that if it wasn't for my lack of insurance that they would of put me on the benlysta, I was super upset that my doctor suggested that after I lost my insurance because ever since they were doing trials for belysta I wanted to get on it. I personally would do it, but thats me. Talk to your doctor and look at all the information and results the critical trial has showed so far.

  3. #3
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    for a trial to get to the stage of human trials.....
    it has already proven to work.
    and to be within the safety guidelines.

    i would consider any trial offered to me...
    but i would also discuss it with my doctor.

  4. The Following 2 Users Say Thank You to steve.b For This Useful Post:

    E42brchick (04-25-2012), tripLexie (04-24-2012)

  5. #4
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    I agree with Steve. At this point, I think most of us are up for almost anything! Just talk to your doc.. And what is the trial!? I wanna do it haha!!
    "Rule number one is, don't sweat the small stuff. Rule number two is, it's all small stuff."
    -Robert Eliot

    Dx: Potential Lupus, Diffuse Systemic Sclerosis, Mixed Connective Tissue Disease

    Rx: Prednisone 5mg 1x daily, Lyrica 75mg 2x daily, Omeprazole 200mg 1x daily, Xanax .5mg prn

  6. #5
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    this was something that has been discussed with my doctor, he was the one that got me into the reason I am considering it, well is the doctor and I were talking about doing an infusion medication, however I don't have any insurance and I had to stop going to the rheumy doctor cause it was costing me a ton of money that I don't have and I can't work and was denied disability again. So the doctor find this place that is a Rheumatology clinic that is doing a trial on infusion meds. It seems like the best way for me to go since I am stuck with no health care except the one great doctor that is having to learn about lupus as we go cause it is not his field and he is a clinic doctor.

    I will say that this doctor has done a wonderful job so far and seems to do what he can to help me, even with giving me most of my meds very cheap for me since I am on a number of them. So he must know what he is thinking when we discussed this.

    I have searched on line and saw that there are several clinical trials going on and I have studied up on them so I know what I am getting into. I think I am just nervous about it, that'a all.

    Thanks for the comments and postings
    Lea
    SLE Lupus diagnosed 8/8/11
    COPD,Raynauda's, IBS, Asthma, Sleep Apena, Amenia and Arthritis,Diabetes,Reflux TMJ, temporal arteritis
    Half dead, cripple and crazy but still above ground.
    Medication
    Novolog injections, Medrol injections, MTX injections, Dicyclomine, Plaqulin, Iron, Spreva inhaler, Advair inhaler, Albuteral inhaler, Fish Oil, Calcium, Diclofenac, Citalopram and doxcycline

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