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Thread: Is my lupus evolving??!

  1. #1
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    Default Is my lupus evolving??!

    Ok so recently I realized I am flaring every month and I used to feel a lil better the week of my periods. Now, even at the moment, I am in a flare. I have 4 mouth ulcers even after using a steroid rinse and the burning/numbness/ache I get in my legs has now spread to my arms from my wrists up into the base of my neck. I wanna know why this is as I am kind of in shock about it and haven't had new symptoms before since it started a year ago. :/ Can anyone relate?? Thanks -Brittanee
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

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    Default

    hi mommyof1....the burning aches that you describe could be fibromyalgia. There are several pressure points in the shoulder and neck area. My legs also ache, and my wrists always hurt. Sometimes i have a hard time telling the difference between the lupus pain and the fibro pain, but the burning pain is usually around the fibro pressure points.
    Phyllis

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    hey again. i dont have any pressure points related to fibro so i was wondering if i could still have it anyway?
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

  4. #4
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Default

    Did you test your pressure points yourself or was it done by a doctor. I only ask because we are not usually able to test our own pressure points, but when a doctor/nurse/PA does it, it can make us jump off of the table.

    At any rate, you may be in the midst of a Lupus flare that has affected you differently from previous flares. That is not at all unusual as the disease changes within us! Do you have an appointment to see your doctor anytime soon? If not, make one. If so, make a list/journal of your symptoms, how they've changed, and when you began to notice them.

    Plaquenil has been known to have a positive effect on mouth ulcers, however they take a while to work. Often, doctors will give you Prednisone with the Plaquenil so that you can see/feel relief sooner.

    I wish you the very best
    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Default

    hi mommyof1, Saysusie is so correct. We can not test ourselves for fibro pressure points. But if a physician touches us at one of the points, we either jump off the table or take a swing at the dr. So, let your dr. check you and just see if this is what is going on. I hope it is not, because fibro is very painful, but it would answer some of your questions.
    Phyllis

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    Red face

    I have been checked for fibro several times and dont have any pressure points :/ Idk which is worse the fibro or neuropathy?
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

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    hi brittanee. What a question, i don't know which one is worse, they both cause extreme pain. Ok, i am glad that a dr. has checked you for fibro, now you can mark that off of your list. Lupus is a progressive disease, and you might want to call you dr. to see if he/she can get you out of this flare cycle. When a flare lingers on for weeks, it becomes so hard to deal with it. Don't let it get too bad before you ask for help.
    Phyllis

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    Angry

    I have been asking for help and letting my dr know that my flares aren't going away. Even if they aren't horrible I personally dont think its a good thing. I keep stressing prednisone but they are being stubborn with it because of side effects. What can I do?
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

  9. #9
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    i don't know. I am experiencing the same thing. My flares are getting worse, and i am resisting prednisone. The reason i agreed to mtx was to try to avoid prednisone. I guess, we either take the steroid or deal with the flare, i wish there were other options.
    Phyllis

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    Default

    The thing with my Fibro is that it was flared up REALLY BAD when i was examined for it so, the dr diagnosed it. Well, another dr tested me for it and i wasnt experiencing it at all THAT day so THAT dr said i DONT have it. IDIOT! IF he KNOWS about it like he should, then he would KNOW that its not necessarily present at all times. IT FLARES on and off along with my Lupus flares. AND THAT also depends on how BAD my flare is. It also depends on how much my Sjogrens and Raynauds is acting up that day. My body can be all over the place and im sure yours is as well SO, dont let ANY dr take ANYTHING away from YOU that YOU KNOW is happening to YOUR body OR that another dr has diagnosed. Get any and ALL tests done by as many drs as you NEED to to get an answer that YOU KNOW is the TRUTH. GOOD LUCK!!!
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

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