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Thread: I was diagnosed a few days ago..

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    Default I was diagnosed a few days ago..

    I made a thread here (explaining frustration about going to the doctor and him not officially diagnosing me, but giving me a higher dose of Plaquenil - 400 MG (200 MG in the morning 200 MG at night). He said "I don't think you have Lupus, but here is a medication that treats for it" (I wasn't the one who brought the Lupus up tho). After reading what Lupus was that night, I honestly felt like "Wow, I fit into A LOT of what they are saying". So 3 months later (bringing us to now), I was having another flair whilst seeing him... hands swelling, small sized blisters in my mouth, and I told him how I had to cut a ring off my finger... and the over all drain/ fatigued is really bad...

    He started to go into "the last time we looked your lupus had some activity".. and I said... "so does that mean I had/ have Lupus???" and he said, I believe so... (He's a rheumatologist). He went into saying it wasn't a sever Lupus, and was "mild", meaning it would only affect my skin and joints. I have mixed feelings about this label.. but overall I'm glad I know *what* is causing the issues.

    I noticed on my checkout paper however.. he didn't have Lupus listed under the "Diagnoses associated with this visit" but was the same thing as it said last time, Joint pain, Muscle pain, platelet dysfunction, Positive ANA. Maybe it just wasn't added on yet.

    He has me on the following medication -

    Plaquenil - 400 MG (200 MG in the morning 200 MG at night)
    Prednisone - 5mg Tablets to start with (after 14 days he wants to higher dose for a longer term use).
    Flexeril - 5mg take 3 times a day, as needed (However he wants me to take all 3 doses for the next 3-4 days to get swelling down).

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    Hi Venny;
    I can hear a bit of your frustration in your post. Let me try to alleviate some of that for you. Lupus is a very difficult disease to diagnose and most doctors are loathe to make that diagnosis without first eliminating all other possibilities. Many of us have been exactly where you are, unfortunately.
    However, where you are quite lucky is in the fact that your doctor, in spite of not giving you an official diagnosis yet (or at least not putting it on your paperwork), is willing to treat you for your symptoms! That is a rare occurrence for most of us. The medications that he has prescribed are generally the first line of defense in the treatment of Lupus and for many of us, they do provide relief for our symptoms.
    I know that it is important for you to know exactly what it is that is causing your issues. However, what is more important than that is that those issues are being treated at this early stage of the disease. Your doctor feels that you have mild lupus - your treatment regimen is designed to prevent your disease from becoming severe. May I suggest that, in conjunction with these medications, you make the appropriate lifestyle changes just as if you did have a diagnosis? In this way, you can also help yourself to prevent exacerbation of your symptoms or to prevent the development of new symptoms.
    It actually sounds as if you are in competent hands at this point and if you take precautions by making the lifestyle changes, you may find that you can manage your symptoms quite well.

    Best Of Luck
    Peace and Blessings
    Namaste
    Saysusie
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    Quote Originally Posted by Saysusie View Post
    Hi Venny;
    I can hear a bit of your frustration in your post. Let me try to alleviate some of that for you. Lupus is a very difficult disease to diagnose and most doctors are loathe to make that diagnosis without first eliminating all other possibilities. Many of us have been exactly where you are, unfortunately.
    However, where you are quite lucky is in the fact that your doctor, in spite of not giving you an official diagnosis yet (or at least not putting it on your paperwork), is willing to treat you for your symptoms! That is a rare occurrence for most of us. The medications that he has prescribed are generally the first line of defense in the treatment of Lupus and for many of us, they do provide relief for our symptoms.
    I know that it is important for you to know exactly what it is that is causing your issues. However, what is more important than that is that those issues are being treated at this early stage of the disease. Your doctor feels that you have mild lupus - your treatment regimen is designed to prevent your disease from becoming severe. May I suggest that, in conjunction with these medications, you make the appropriate lifestyle changes just as if you did have a diagnosis? In this way, you can also help yourself to prevent exacerbation of your symptoms or to prevent the development of new symptoms.
    It actually sounds as if you are in competent hands at this point and if you take precautions by making the lifestyle changes, you may find that you can manage your symptoms quite well.

    Best Of Luck
    Peace and Blessings
    Namaste
    Saysusie
    Thanks for your supportive post.. Lupus isn't my only diagnose (explained more in the introduction thread). But it's differently not healthy for someone 20 years old to take 32 prescription medication a day. So that is where my uneasiness and feeling unsure with the doctors come in. I really am grateful for my doctor... he seems to really care. It's kinda hard to trust the doctors when one specialist is telling me I have one issue, and the other saying ... no no, it's this issue. I realize they aren't god and don't have all the answers!

    Can I ask what you mean by "appropriate lifestyle changes"? I eat really healthy, and I try my hardest to be healthy....I'm normal weight.... I'm told not to exercise or "be alone" as my general doctor is in fear with my randomly high blood pressure and high pause (ranging from 124 -140 BPM) and dizzy spells it isn't healthy for me to work. and fearing I might black out from it. he thinks that it's all connected to the Lupus.

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    The most common lifestyle changes that we have to make are:
    1. Avoid exposure to the sun (the UV/UVB rays are harmful and can cause a flare-up). If you must be in the sun, wear lightweight clothing that covers your body. Also, never go out without sunscreen (minimum SPF 50), hat and sunglasses.
    2. Avoid places with fluorescent lighting (offices, department stores, etc.) If you do go to those places, again wear lightweight clothing that covers your body.
    3. Avoid certain foods (legumes, alfalfa sprouts, uncooked mushrooms, raw meats, herbal remedies of any kind). Since you already maintain a healthy diet, I just listed here the ones that you may not have known about.
    4. Exercise - as this is an issue for you, ask your doctor about doing slow yoga. It is a non-strenuous form of exercise that many Lupus patients employ. Like you, many of us cannot do exercises that affect our heart rate and/or blood pressure.
    5. Take recuperative rest periods - listen to your body and don't push your limits.
    6. Avoid undue stress

    I hope this was helpful to you.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Quote Originally Posted by Saysusie View Post
    The most common lifestyle changes that we have to make are:
    1. Avoid exposure to the sun (the UV/UVB rays are harmful and can cause a flare-up). If you must be in the sun, wear lightweight clothing that covers your body. Also, never go out without sunscreen (minimum SPF 50), hat and sunglasses.
    2. Avoid places with fluorescent lighting (offices, department stores, etc.) If you do go to those places, again wear lightweight clothing that covers your body.
    3. Avoid certain foods (legumes, alfalfa sprouts, uncooked mushrooms, raw meats, herbal remedies of any kind). Since you already maintain a healthy diet, I just listed here the ones that you may not have known about.
    4. Exercise - as this is an issue for you, ask your doctor about doing slow yoga. It is a non-strenuous form of exercise that many Lupus patients employ. Like you, many of us cannot do exercises that affect our heart rate and/or blood pressure.
    5. Take recuperative rest periods - listen to your body and don't push your limits.
    6. Avoid undue stress

    I hope this was helpful to you.

    Peace and Blessings
    Namaste
    Saysusie
    Why no herbal remedies?? Could this make the issue worse? I do not think herbs can treat, cure or manage lupus or any disease, but I often find oatmeal and lavender baths.. very nice, using medications from drug stores for swelling such as arnia jel (it's for joint pains/ swelling and helps those who easily bruise), and do the apple cider vinegar "mix" (2 table spoons of apple cider vinegar, honey and a tall glass of ice water mixed together.) because it over all makes me feel a small bit "better". Could any of these things worsen lupus? Now.. I'm kinda freaked out >.<

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    some things to remember with supplements .......and most herbal remedies fall into the term (when used for medical reasons),supplements are designed to be used in conjunction with "normal" medications ...not to the exclusion of them.supplements do not require the same rigorous checks and safety guidelines as "medication"it is not uncommon for supplements to react with modern medications, ......so it is recommended that you talk to your doctor or pharmacist, with a list of all medications and supplements,checking for interaction difficultiesdifferent people react very differently to "supplements", therefore we as a forum try to stick to what we can control.supplements are a very individual thing.it is not uncommon for many of us to take supplements, but it is so varied and individual that we have found it easier to not get into "discussion" about which supplement will or wont work for someone.
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

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    Quote Originally Posted by steve.b View Post
    some things to remember with supplements .......and most herbal remedies fall into the term (when used for medical reasons),supplements are designed to be used in conjunction with "normal" medications ...not to the exclusion of them.supplements do not require the same rigorous checks and safety guidelines as "medication"it is not uncommon for supplements to react with modern medications, ......so it is recommended that you talk to your doctor or pharmacist, with a list of all medications and supplements,checking for interaction difficultiesdifferent people react very differently to "supplements", therefore we as a forum try to stick to what we can control.supplements are a very individual thing.it is not uncommon for many of us to take supplements, but it is so varied and individual that we have found it easier to not get into "discussion" about which supplement will or wont work for someone.
    Ahhh, good point.. I never did think about medication reaction!! But are there any known supplements to make lupus worse? I'm not much into the pill supplements, but I often drink a lot of tea's with herbs and stuff in it. I'll check with my doctor tho.

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    The sickest I have been in the going on 4 years since I was diagnosed was when I started taking mega-men vitamin supplements.
    These are just your normal vitamins that are designed for men but also contain some immune stimulants.
    I ended up in the ER with a fever of unknown origin.

    I learned never take anything no matter how innocent it seems with out checking into it first!

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    Quote Originally Posted by n.mac View Post
    The sickest I have been in the going on 4 years since I was diagnosed was when I started taking mega-men vitamin supplements.
    These are just your normal vitamins that are designed for men but also contain some immune stimulants.
    I ended up in the ER with a fever of unknown origin.

    I learned never take anything no matter how innocent it seems with out checking into it first!
    Wow!!! Alrighty, yeah, I deffo need to talk to my doctor, because I use a few herbs, I wonder if it could be messing with anything.

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