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Feeling Blue After Reading about Lupus

Discussion in 'Living with lupus' started by Larz77, Feb 8, 2016.

  1. Larz77

    Larz77 New Member

    So I've had Lupus for a long time (close t0 25 years). The first 15 years of that were very rough (before they actually figured out it was Lupus that I was dealing with (they thought it was Vasculitis after a kidney biopsy). When they discovered it was lupus ten years ago, they put me on Plaquenil and I had 10 really decent years.

    Then this year hit and there were several big life stressors that I have been going through and I think I spawned a lupus flare. Haven't been feeling great, various muscle/joint aches, vertigo, headache, brain fog, insomnia, never-ending cold and dealing with weird anxiety that I usually only see during a flare. Of course there are these bazaar symptoms I never had before like a low body temp (cold and I'm normally hot blooded), etc. Anyway, it feels like it did years ago when I didn't know what was wrong and they put through the broad range of tests trying to figure it out, but can find nothing. The Rheumy doesn't think it's my lupus because although I have certain markers off in my blood work, they are not much different than then I tested and was feeling fairly decent.

    Anyway, I was reading about Lupus over the weekend and, well it scared me. You read on one hand how a person with lupus can live a "normal lifespan" but then this article covered all the things that could and can go wrong with someone battling lupus. The fact that at one point it affected my Kidney's doesn't bode too well for me. Most data on patients cut out at 15 to 25 years.

    So I need comfort if there is some. Does anyone else read this and get that spine chilling fear? Have there been people that have had Lupus longer than I?
  2. lazylegs

    lazylegs Moderator

    Hi Larz,

    Reading about Lupus can be a help or a hinderance. I choose to look at the positive. More research is being done now than before. The new drugs have expanded our life expectancy. If things take a turn for the worse the doctors have a much larger arsenal to throw at it. In the meantime I try to do what I can to keep things on an even keel.

    Take care,
    Eileen T likes this.
  3. x_claire_x

    x_claire_x Moderator

    The other reason a lot of research finishes at that benchmark is because it was then that the new meds were introduced and so it is still new information. Even in the old days some people did live to old age as it depended on how it affected each individual. A lady who lived near my godmother lived to 75 with the disease since her young adulthood and was very out of control.....you just never know, and that goes for life generally. Don't let it worry you unduly, it is a negative emotion which does nothing to affect the outcome !
    If you took all the things that can go wrong when living with Lupus...you need to balance that by remembering all the things that can go wrong in real life without Lupus...and as you get older etc. All these articles are written without any balance..so always look at the untold picture too....hopefully it will help :0)...Claire
    Eileen T likes this.
  4. Larz77

    Larz77 New Member

    I haven't even gotten to guys having lupus and that from all I read, they do worse than women. I am really struggling with this all of a sudden. Thank you for feedback.

    On a side note, my doctor has asked if I wanted to try a chemo drug. As I don't seem to have any organ involvement at the moment, it feels like I would just be trading one set of symptoms for another set of side-effects. Has anyone ever gotten to feel normal or great on the Chemo drugs, or should they really be reserved for times when disease is more dangerous than the drugs?
  5. lazylegs

    lazylegs Moderator

    I tend to prefer fewer medications so when I am stable I usually put off adding something new. When the disease is more active I lean to trying something to help knock it down. You are the only one that can weigh what is best for you.

    Take care,
  6. druid

    druid Registered

    My partner had been on Plaquenil, Humara and low-dose Methotrexate (IIRC).
    Felt like hell. Gave it all up figuring that the "solution" was worse that the disease.
    Cleaned up the diet and voila!
    By cleaned up the diet I mean removed inflammatory foods.
    Meaning Vegan, Gluten free, Dairy Free, Sugar Free.
    30 days later was very nearly back to normal - not sleeping 16 hours/day and feeling exhausted.

    Not claiming that it's some sort of miracle but worked in this case.
    Rheumie was astonished at the blood work two years later.
  7. Eileen T

    Eileen T Registered

    Looking on the bright side Larz - I believe there are quite a few of us oldies with Lupus on this site :thumbsup: :)
    keebler likes this.

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