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Thread: I'm feeling a little overwhelmed...

  1. #11
    Join Date
    May 2010
    Thanked 312 Times in 251 Posts


    ... and the vitamin D is "accumulative", and can cause issues if you take too much. Doctor's consultation with blood work is necessary to track it...
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

  2. #12
    Join Date
    Aug 2012
    Thanked 1 Time in 1 Post


    Hi -

    Firstly, to address Rob's mention of thread rules, I read through them and I'm not quite sure how what I said actually impinged on them. I in no way suggested that I believe I have a cure for Lupus, nor did I or would I encourage anyone to take an approach that is not medically recommended - I simply stated that the current treatments we have are still not wonderful (for instance, Predisone doesn't sound like an ideal treatment, but unfortunately that's all we have) and I'm a little worried about the side effects of certain medications, which seems like a perfectly fine comment to make. In response to the vitamin comments, I actually asked my rheumy about this at my appointment and he said they "certainly wont hurt" and encouraged my use of vitamin D, B, C, hair/skin/nails formula and omega 3 tablets. Once again, this is simply advice that my doctor gave me personally, and I'm not here telling you that is what you personally must embark on.

    I had my first appointment last week with the rheumatologist/dermatologist. He didn't seem to even see rosacea as an option regarding my rash - it wasn't mentioned at all. Despite auto immune diseases being notoriously difficult to get a diagnosis for, I left the appointment with a current diagnosis of SLE/Lupus. Although that seems very quick, I was extremely impressed with him and in no way think he is being irrational or making a decision based on sketchy evidence - he was very thorough and I'm sure he must be quite certain for him to have given a diagnosis so early on. He says I currently fit into the mild category, and that most Lupus patients he will see in his lifetime are also considered mild, so that was comforting. He ordered another set of bloodtests in a different lab, to check that the results weren't to do with calibration inaccuracies. He says he will be starting me on Planquenil for the pain and the rash, which I was pleased with because it has so little side effects. He says my nails are slightly pitted, and he checked for signs of hair loss etc. All in all I was rather happy with the appointment. He asked me to keep a day to day journal of symptoms, which I've started doing.

    At the moment the pleurisy-like feelings in my lungs are starting to get more uncomfortable, and the fatigue is quite extreme. My knees are almost numb from pain. My rash is actually ok, but perhaps I'm just getting used to it. I've been having some brain fog moments, making silly mistakes or forgetting things more easily which is strange. The thing I'm currently most worried about is that my scalp has been burning slightly - every now and then I get this burning sensation in a spot, or it'll be on one side of my head, and it will go away. It's quite mild, almost unnoticeable. I think my eyebrows have been thinning slightly, but I can't tell if that's purely because I'm more alert due to this diagnosis of changes, that might not actually be happening. My eyebrows have been feeling slightly itchy, but I mean ever so slightly and they aren't red or noticeably irritated. I have very thick hair naturally so I'm not even sure if I would notice hair loss or the onset of it. I've also been getting more freckles on my face, quite a few have popped up in a small space of time. I don't know if any of these tingling symptoms or freckles are something to worry about, or me just being paranoid.

    Also, does anyone know if it is a certainty that you have systemic sclerosis or scleroderma if your pattern is nucleolar? I've read that this is the case, yet my pattern is nucleolar and I have none of the symptoms. My ss-b was positive as well as my ANA and I had a slightly elevated level of infection, and the prospect of scleroderma or sclerosis have not been mentioned to me at all. I'm guessing then that neither my GP or rheumy see this as the case, but the statistics I've read seem confusing.
    Last edited by MsMarvel; 08-21-2012 at 04:38 AM.

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    steve.b (08-21-2012)

  4. #13
    Join Date
    Mar 2011
    pinjarra, western australia
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    thank you for the update.
    it is good to hear that your rhuemy went so well.
    yes some of us do get a quick diagnosis....
    if your symptoms and bloodwork all fit...and the doctor is looking for it.... then there is no reason you should not get a quick diagnosis.

    the problem many of us face is that out symptoms and bloodwork could also point to something else.

    i am also a moderator here, and we have had issues in the past with people not understanding our board rules.
    each one of the moderators has taken a personal interest in keeping the board safe for all members.
    unfortunately sometimes our words do not come accross as we had planned.
    i have also had mine missunderstood a couple of times.
    i know rob did NOT mean to upset you !!!
    he like many of us have good and bad days.
    on a bad day we keep our posts as short as possible.
    sometimes it can be taken as being rude, but i know rob is not a rude person.

    a couple of things, that might help you to understand a little more about lupus.
    lupus is our auto immume system working in overdrive....
    it is attacking good and bad cells alike.
    everyone has lots of different cells, so.....
    lupus can represent itself differently or similar, depending upon what it is attacking.

    for me 2 big issues are inflamation, and blood flow.
    when lupus attacks a muscle...
    it causes inflamation.
    this inflamation can also cause reduced blood flow.

    the combination of these two, cause me most of my daily complaints.
    this could explain quite a few of your symptoms.
    i myself have just started another round of pred... because of chest inflamation.

    yes it is possible that you do not have systemic sclerosis or scleroderma, your lupus may not be attacking you in that area at present.

    again thank you for keeping us updated on your journey.
    it is good to hear of a switched on rhuemy.

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    Derrie (08-21-2012)

  6. #14
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    I am very glad that you are doing as your doctor said but I completely understand why Rob posted what he did. You not only commented about the vitamins, as you stated above, you also commented about your mother being more fond of eastern medicines than western and your concern about not wanting to take the meds that we know help our disease. While we here at WHL are very open to discussions on almost all things we have no tolerance for any discussion that puts natural or unproven cures/meds above those that have been proven to help this disease (IE steroids). No, they are not perfect but they keep us alive. Too often the people that die from this disease are the ones that are looking for unproven ways to heal themselves. Whenever that topic comes up one of us will do just as Rob did. Our founder, Saysusie, lost her daughter because she was young and tired of taking all the meds. Our goal here is not only to provide a safe, warm environment where we can be together but it is also to make sure that EVERYONE knows that the only real treatment is that in which our Western Medicine doctors approve of and use. You are using supplements with your doctors approval but Rob had to make it clear to everyone that discussion of NOT taking proven meds as a treatment of this disease is not allowed on this site.

    Sounds like you have a really good doctor. You are very lucky! As to the pattern question... it tends to point at those others but it can also be found in Lupus patients. Add to that the fact that once the doctors figure out that you have an AI disease (means they are paying attention) it is often found that you may have several. Good news is that treatment for most are the same.
    Last edited by tgal; 08-21-2012 at 10:25 AM.

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

    ~Winston Churchill~

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    steve.b (08-21-2012)

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