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Thread: I go to my first rheumy sept 6th

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    Exclamation I go to my first rheumy sept 6th

    Ok I have needed a rheumy dr since 2009 but due to the loss of my medical insurance we could not afford it. But this last year has been rough on me and I went into serious flares at the begenning of summer. My regular dr that I was going to would not do any test that we felt she needed to do because we didn't have insurance, But we had to change doctors and I had to start going to a clinic, which was finally able to get me to the right place and do the right kind of testing. It all started about a month ago when we knew we were finally getting somewhere. The ANA test was postitive, for the anitthroglobulin antibody, and also showed that something was attacking my joints at a very high level. I have been put on prednisone 60 mg a day for the last month. The dr says they want to shook my system. They set me up with the appointment for the rheumy dr at the musculoskeltal institute, I go to the first appointment on the 6th. I want to be prepared when I go, I want to know what To ask and how to ask it.

    I hear people talking about the results of blood test, especially the ana test. I have treid to find some information about such test and how to understand them but can not find anything that makes since to me. "Anitthroglobulin antibody" What ??? Anybody understand that word... and the ANA test what numbers do they go by and what numbers show as positive or negative??? and what should the numbers be???

    Now when I go to the rheumy dr I feel like I should ask questions, I am not sure where to start and who to explain what I want to know..My regular dr who did the ana test said that if I had any questions he would gladly answer them or talk to my husband if I needed to, but the day that he told me I just wanted to leave the office and go home, I have known for years that they were going to tell me that I had lupus, but actually hearing it was a diffferent feeling. There is no one in my family that has been dignosed with lupus but I feel that my mother has it and her sister has type of autoimmue disorder, I mean when they said you have lupus it all made since to me I all came together.

    Right now I think the doctors are getting together for a treatment plan, so far I take a long list of meds and the prednisone is the newest. The doctor states since I am on a high dosage that I should not go out much and stay home. I hate that part and understand that prednisone attacks your immune system, so being around other people may not be a good idea. Do other people have to go through this? The dr says that once we get my immue system down some, they will reduce the prednisone down to a low dose. My Aunt takes a low does of it and has been on it for years, she was surprised that I was on such I levels. I know that there is some newer drugs out there for lupus and was wondering if any one was on them? I also understand that taking my medication is important but it seems like if the medicaition makes people feel worse then why take it? not that I would not take it, just a thought... This is just a lot to jump into even though I have been battleing this most of my life and especailly the last 7 to eight years now.

    My dad does understand why I have it thinking that I am still to young to have it, I am not but 42 years old and tried to explaine it the way it was explained to me. Mine was dorment for a very long time and due to stress levels in my body from losing my son 13 years ago when he was only six brought everything out in the open before it was ready to show up. Stress is a B*tch. But with knowing what I know now it has opended my eyes to what My mom and my kids have been dealing with, I feel I am lucky I have not had much of the rash and the rash that I did have was not even on my face. Even though I did have a large rash on my neck and chest and back for several years and what concers me is the fact that my oldest son sam who will be 21 in Oct also had the same rash in the same places. It scares me that he could possibley start showing other signs as well.

    Sorry this is so long but I am trying toget all the information I can right now to help the doctors and to talk them better when I go to see them in sept. and to also educate my family as well..

    Thanks
    Lea Ann
    Lupus dignosed 8/8/2011
    diabetes, raynaudes,IBS asthma, Sleep apena, arthritis. ect
    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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    Im not feeling the best today so Im sorry in advance if what I say doesnt make sense.

    My understanding of ANA is that 1:80 is about borderline positive. Mine was very high at 1:2600. The ANA levels show the level of antibodies you have attacking YOU. The high dose steriods will knock you system out, which means it cant be attacking you. Once its under control you slowly go down on it. I was on 36mg and I did have a lot of unpleasant side effects but once my system was getting better from them my doctor let me start going down on them. I wouldnt have traded that treatment for anything because I dont know that I would have gotten much better without them. As far as being to young to have lupus, Im only 18 lol I've officially had it since I was 16. Lupus doesnt care how old you are or where you are in life. I would ask your rheum what all your lab results are and ask what side effects you may have from any meds your on.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    There's mention of the ANA titers at the bottom of this link... http://www.lupus.org/webmodules/weba...02&z=99&page=3

    I'm glad that you're finally getting the medical attention you've needed for so long, Lea Anne. And I'm so sorry about the loss of your son. (((Hugs)))

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    Let me begin by giving you my condolences on the loss of your son. Little could be as bad as losing a child.

    Now, from one 42 year old to another 42 year old I will tell you that this is a hard disease. My hopes are that you can get the steroids under 60 mg as soon as possible. I had a doctor tell me once "Steroids make you feel good all the way to the grave". I have been on steroids for a little over 2 years trying to get my flare knocked out. The problem that we have is that we really have very few options right now. Plaquenil and low dose steroids are the front line defense for Lupus patients. The plaquenil takes 3 to 5 months to fully get in your systems but usually it helps many of the symptoms. As for the new medicine... LOLOL it may work very well but I believe at last count the new medicine was going to cost $35,000 a year. Yes, a YEAR without insurance. Looks like many of us will not be using it.

    Lastly I am going to post a link from the Lupus Foundation giving information about many of the tests used and why they are needed.

    Lab Tests Looking for Lupus

    One other thing I need to point out. There is no "test for lupus". These tests are used in connection with symptoms to make the Lupus diagnosis. Lupus is basically a disease of exclusion meaning that the blood work and the symptoms rule out every other disease and that the person at least 4 of the criteria for diagnosing Lupus. I am posting a link to the "sticky" in the forum giving that information.

    Criteria for Diagnosing Lupus

    Hope this helps
    Mari

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

    ~Winston Churchill~







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    I agree that I want to get the steriods down from the 60 mgs I am taking, I just finished up the cycle today and go back to determine how they are going to give it to me again, MY aunt takes the same steriod she takes 5 mgs a day and has for several years and says that it doesn't bother her as it did in the begenning. I know the first time I was on it, it was not bad, but this second go around was horrible, I think it effect my mind, I would forget things and do things that were odd and found my self questioning what I was doing which was kind of scary but the dr said it was normal. Didn't seem normal to me. Thanks for the links will have to check them out, have been reading up on everything I can find and making notes so that when we go to the dr we will know what ask. I want to be prepared, plus I want my family to understand especailly my husband.
    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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