I got a diagnosis today after trying to figure out what’s wrong with me for twenty years. My grandmother died at a relatively young age of lupus complications and she had to end her whole career at 36 because she was so sick. I’m 27, and I am terrified I’m going to end up like her. Her quality of life was absolutely awful for the entire time I knew her. I don’t want that for myself.

  • Boozilla@lemmy.worldEnglish
    19·
    3 months ago

    Sorry to hear this.

    An internet forum like Lemmy is not the best place for medical advice. Most diseases can vary significantly from person to person. Lupus comes in multiple forms. The musician Seal has a form of lupus, and he’s 61. Autoimmune disorders are very complicated, because the immune system is very complicated.

    Your doctor should be able to give you guidance and “what to expect” type information. If there is a patient portal or email you can use, be proactive and reach out to your doctor with your questions. If you’re in the USA, patients very much have to actively navigate this stuff, and advocate for themselves. Your doctor might give you a pamphlet or booklet. Read it.

      • SnausagesinaBlanket@lemmy.world
        10·
        3 months ago

        I have a friend whos wife has had it for decades. She takes Hydroxychloroquine and has almost no symptoms except unwanted weight loss. I helped her get some Cannabis gummies and now she maintains a good average weight and she was able to keep her job. Its better to know you have and and take it on then to wonder what’s the matter.

        • LaunchesKayaks@lemmy.worldOP
          8·
          3 months ago

          I was put on hydroxychloroquine a few months ago and it’s great, but having a formal diagnosis now is making it scary.

          • roofuskit@lemmy.world
            6·
            3 months ago

            I’ve been on hydroxochloroquine for over a decade. Other than having to increase the frequency of opthalmologist appointments the longer I’m on it, it’s done nothing but improve my life.