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Newly diagnosed

Discussion in 'Newly diagnosed' started by tishalou, Feb 11, 2017.

  1. tishalou

    tishalou New Member

    Hey everyone! I'm new at this whole thing, and adjusting to my new normal. I was just diagnosed with SLE on Monday even though I've been showing symptoms for a couple of years now. I recently had my second baby (3 months postpartum) which caused an insane flare up, leading to my diagnosis. My main question is has any one had troubles with their lymph nodes (enlarged lymph nodes, pain) and what do you do to help with it?! My lymph nodes in my armpits, arms, breasts, legs and groin hurt soooo bad! I'm about to go crazy!! Thank you! :)
  2. mark176

    mark176 Active Member


    The lymph node swelling is common. However, once its controlled and meds kick in that problem will go away. Lymph nodes swell when your immune system reacts to bacteria, well in lupus the immune system is constantly active as its fighting body

    When i was on plaquenil alone i still go nodes swelling. Now im on plaquenil and mepacrine i dont get the swelling

    Are u on meds? If so which ones

    Kind regards
  3. tishalou

    tishalou New Member

    Mark, thank you so much for your reply! I'm so happy to hear that I'm not the only one to struggle with the lymph node issue! That makes sense why they would swell and cause pain though. It's hard because I love my PCP but he just doesn't have all the answers to my questions! I can't wait to get into a rheumatologist and get more answers.

    I just started prednisone three days ago and am noticing a little difference in my joints/ribs but no difference in my lymph nodes?! I guess I just need to be more patient right?
    Lupusdude likes this.
  4. mark176

    mark176 Active Member


    I never found prednisolone to be that effective for me. I found the antimalarials to be more effective. I think the steroid is more antiinflammatory than an immunosuppressant/modulating agent. The other problem is the steroid breaks down quickly in the body so i found the benefits run out before the day was up. Dont really like steroid. It can also cause other problems. I found with my GP that they were not that knowledgeable to be honest. I found the rheumy much better, although make sure u get a good one that has experience of autoimmune, otherwise you could get the run around like myself and others.

    It likely they will start u on plaquenil or hydroxychloroquine, great drung but get a baseline check on your eyes done. Long term it can cause eye problems in a minority of cases. Eye problems are RARE

    Kind regards
    loopie017 and Lupusdude like this.
  5. x_claire_x

    x_claire_x Moderator

    Hello........Oh yes ... painful lymph nodes particularly the armpits/groin..... It took a while to calm, some days felt like I was holding my arms out like a gorilla and walking like painful :0((

    I changed my deodorant to an all natural one as that definitely exacerbated the problem did sweating. I changed my shower gel and hair shampoo to no SLS etc ...and even changed my toothpaste (has helped with reduced mouth sores ) . But ultimately the biggest noticeable change was when my body was calmed down and the SLE not the meds will help hopefully a lot for you .

    You are definitely not alone xx
    Last edited: Feb 15, 2017
    Penny Mathieu and Lupusdude like this.
  6. Lupus Conquerors

    Lupus Conquerors New Member

    Having swollen lymph nodes means something. I know the culture for illness is to handle the symptoms but I am a firm believer that symptoms are trying to tell you something and you should understand what they are trying to tell you.

    Specifically, the lymph system is part of your immune system, it is a way to fight disease.

    You want to help as much as possible.

    Unfortunately, most handle Lupus by attacking the immune system instead of helping it.

    I would start with making sure you are drinking tons of soft pure water ( distilled).

    When it comes to strengthening the immune system: you want to focus on the following:

    improve circulation to and oxygenation of the cells,
    to change the intestinal flora with a high fiber vegetarian diet,
    to discourage cancer cell growth with hot baths,
    to stimulate the immune mechanism for cancer and infection resistance,
    and to combat toxins which cause anemia and loss of appetite.
  7. x_claire_x

    x_claire_x Moderator

    Swollen lymph nodes in lupus are because the immune system is overactive. Once this system is balanced , rather than attacked...people can get on with their lives and the lymph nodes settle down...they swell when things are out of kilter again.

    There is such a thing as over hydrating, especially overloading diseased Kidneys drinking well to hydrate is brilliant but not tons.

    Strengthening the immune system means strengthening the attack on your body.

    when people take meds it doesn't mean that they are disinterested in natural methods and many on here find a way to combine both, with support from their Rheumys. The death rate has dramatically improved since these meds have been used to be a mean average of 5 yr lifespan which was a pretty miserable existence to say the least.

    I agree that everybody should listen well to their bodies and do what is individually correct for them and to not assume every symptom is a Lupus one.

    Do you have Lupus ?
    keebler and mark176 like this.
  8. Lupus Conquerors

    Lupus Conquerors New Member

    Perhaps strengthen is the wrong word. Balance is better.
    What I mean is having it work the way it is supposed to, that means not attacking you.

    Yes, you can overhydrate but most are not having enough. I try to use this water calculation. Drink 1/2 your body's weight in pounds in ounces of water.

    "when people take meds it doesn't mean that they are disinterested in natural methods" did you get this impression from what I shared?
  9. keebler

    keebler Moderator

    Lupus Conquerors,
    Do you have lupus?

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