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Thread: Introduction from Lanette

  1. #1
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    Default Introduction from Lanette

    Hi Everyone. I'm new here...guess that would be why I'm on the introduce yourself page.

    The stats:
    39
    Female
    married
    5 boys ages 10-19
    Live in SE Florida, recently relocated from Michigan.
    Flight Attendant (not any longer due to Lupus and other problems)

    I began getting sick, well sick that I noticed something really not right with me, the end of September. I had a terrible viral flu, gastro upset, although nobody else in my home came down with it. The following week, I broke out in a horrific rash, head-to-toe. I really cannot describe to you how terrible this rash was! On top of that I had aches of all kinds. My body felt ran over by a semi, or a fleet of them. I continued working as a flight attendant, but every flight I was sick, my layovers spent in bed praying to feel better by my next flight. October 20th, I decided to see a doctor. At this point I was not able to swallow much of anything, walking, was excruciating, I was scratching insanely, nauseous, bouts of diarrhea, coughing, unimaginable fatigue...I was a hot-mess to say the least, it's like my entire body went crazy.

    I went to the doctor daily until November 3rd. I left my GP to go see an internist who referred me to a rheumatologist. I left several gallons of blood with every doctor I saw anywhere from 13-22 vials per visit! yet they couldn't come up with what was wrong with me. I had tests upon tests. Two weeks ago my rheumatologist handed me the test results; Lupus, APS, Mixed Connective Tissue Disease, Lupus Anticoagulant Syndrome and most likely MS. I see a neurologist for the MS in a couple weeks. I had the MRI on the 26th. I see my rheumotologist on 12/1 for the results.

    At some point, not sure which day it was, I lost vision in my left eye for about 30 minutes. Of course this terrified me! I guess one of the 'overlap diseases' causes bloodclots, and it seems I have one behind my left eye. I'm on blood-thinners to break it up and careful monitoring.

    So, I'm on Prednisone, as you already know I'm sure, having been there, done that. I'm very concerned about the side effects of Prednisone. I don't want a humpy back, a pot-belly, facial hair and weight gain! This is every womans nightmare drug! Does anyone know how to combat the side-effects of Prednisone? Is there an alternative? I've been on Prednisone for several days and my symptoms are raging-worse when it's wearing off, seems worse than before I began the Prednisone. I don't want a higher dosage!! I want a different drug that isn't going to turn me into a ghoul!

    Vain? More than I ever knew.

    The irony of this is, I was in the process of donating a kidney for my best friend. She has Lupus. What sort of twisted joke is that? I was going through the donation process when I first became sick, so of course had to stop. Thankfully, she has found a donor, and is scheduled for transplant surgery 1/5.

    My doctor told me I cannot fly again, due to the clotting problems. Easy for her to say, I'm a Flight Attendant...or was. I just can't wrap my brain around all this new lifestyle changes. Earning an income? Hah! In this economy. This royally stinks!

    I know this is rambling and long. I thank-you if you've read it this far. If anyone has any insight, advice on drug alternatives, I'd love to hear them. When does this pain go away? When can I begin to feel better? I need to start walking and living life again, not hobbling around like a 99yr old woman. My joints swell almost as soon as I stand up, so I'm sitting on my tuckus all day long, wasting space it seems.

    Thanks for listening.

    Lanette

  2. #2
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    Hi Lanette,

    Welcome to the site. My name is Kathy. I have SLE, Lupus and several other auto-immune disorders. I am wondering why they have not put you on Plaquenil yet. I guess maybe they are waiting until you see the Rheumatologist before they decide just what to do for you. Keep in mind that if htey put you on Plaquenil that it can take up to 6 months to get the full benefit of the medication. Please keep us posted on what is happening ok. I hope that you do not have MS.

    There are a lot of wonderful folks that come in here with lots of good information.

    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
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    Hi Lanette

    And ramblers are welcome :lol:

    We all have our moments and need to ramble from time to time. Your's was a short ramble, you have to practice that one a bit

    Has your doctor mentioned if they plan to keep you on the Prednisone?
    Of why they prefer to have you on the Prednisone.

    I think I would be tempted to ask the questions with the amount of clotting you having. I do not know alot about that drug. I've never been on it.

    There are other members here who have and or are on Prednisone. They will be able to give you more feed back.

    I'm on arthrotec75 and plaquenil. No drug is completely with out nasty side effect. I guess it is really a matter of finding the one you can live with.

    Don't be afraid to talk to you doctor about things that are bothering you about your perscription treatment. There may be other options, or at least make them explain to you why they are choosing a treatment. You have a say in it too.

    Glad you found us
    Oh look ... a cookie

  4. #4
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    thanks for the welcome. I feel I know you two already as I've read numerous posts by you!

    My doctor said she was putting me on Prednisone to put the Lupus in remission. I see her again on Monday, so I'm definitely going to ask about the plaquenil. I'm sure there isn't a generic alternative? I think I'll be losing my health insurance in a month and not sure how I'm going to afford these drugs.

    Do people take Plaquenil along with Prednisone? Does Plaquenil put Lupus in remission?

    Thanks again
    "I am not afraid of storms, I am learning to sail my own ship."
    -- LOUISA MAY ALCOTT

    Lupus, Antiphospholipid Syndrome, Mixed Connective Tissue Disease, Lupus Anticoagulant Syndrome, Spondylitis

  5. #5
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    Hi,
    I wish I could guarantee that Plaquenil would put you in permanent remission, but there is no way I can. Nobody can predict that. The plaquenil usually makes the Lupus flares less severe and helps keep the Lupus from damaging your organs. Lupus is a chronic disease with no known cure as of yet, maybe one day there will be a cure. Lupus tends to run in cycles or is cyclic big time between flares and remissions. It is an awful rollercoaster ride. You will learn in time what tends to trigger a flare. The sun if you are sun sensitive will do it, and so will Ultraviolet rays. A simple cold can do it. The biggest thing that I found that triggers a flare is STRESS big time. Boy with this illness stress is very hard to avoid. I have had this rotten nightmare of a disease for about 44 years. I still get baffled by it and everything it has done to me in the past. I hope that the Plaquenil helps you a lot. I know in my case it has helped a lot. Just remember though it will not keep you from flaring, no drug will, but it will make the flares easier to deal with. I hope that this helps some.
    Please keep posting as we all care for and about you.

    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.

  6. #6
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    Hi,
    I forgot to tell you that Plaquenil's generic name is Hydroxychloroquine.

    Some people do take both of Prednisone and Plaquenil, but they tend to try to get you off of the Prednisone once the Plaquenil kicks in real good. Plaquenil takes about 5 months to get in your system real good. Plaquenil does not have as bad of side affects as Prednisone and is better for long term use. Plaquenil is one of the top of the line medications for Lupus. I hope that this helps.

    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.

  7. #7
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    Thanks Kathy! You're a wealth of information. I really want to try Plaquenil. Anything has to be better than Prednisone!



    Thanks again!
    "I am not afraid of storms, I am learning to sail my own ship."
    -- LOUISA MAY ALCOTT

    Lupus, Antiphospholipid Syndrome, Mixed Connective Tissue Disease, Lupus Anticoagulant Syndrome, Spondylitis

  8. #8
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    Ok, I'm somewhat of a ditz brain.

    My doctor gave me some info to look over between last weeks appt and the first.

    On this, was three additional medications that she wanted me to research and come to her with questions. She said these were medications she would be adding on 12/1.

    They are Imuran, Plaquenil and/or methotrexate? something like that. I can't read her writing very well.

    I was so overwhelmed by all the information, I completely forgot this note until this morning. She did say the Prednisone would be temporary. So I'm assuming that it will be used just until the Plaquenil kicks in.

    Thanks again
    "I am not afraid of storms, I am learning to sail my own ship."
    -- LOUISA MAY ALCOTT

    Lupus, Antiphospholipid Syndrome, Mixed Connective Tissue Disease, Lupus Anticoagulant Syndrome, Spondylitis

  9. #9
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    Hi Oopsy,
    I am glad that your doctor gave you a list of the different medications to research online. I do think that she will be getting you off of the Prednisone eventually. My doctor got me off of it pretty fast too once the Plaquenil got kicked in real good. I am also on Imuran as you can read from my signature. These combinations of medication seem to do ok for me. It sounds like you have a really good doctor that is going to do right by you and I am happy for that. Please keep us posted as to what all the medications are that she puts you on ok.

    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.

  10. #10
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    Hey oopsydoopsygirl

    Sound like you're doctor is going to be good to work with on this. I've been kinda quiet lately so I missed this post.

    Glad you are getting lots of good information.
    Oh look ... a cookie

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