Wegener's? Vasculitis?

  • I have a disease known as either Wegener's Granulomatosis or Granulomatosis with Polyangiitis, a form of autoimmune Vasculitis. It is a disease that attacks the small to medium blood vessels in the body and can cause major organ damage, etc. It can be a bear to deal with and I don't even have it in a very serious form.
    The fatigue and joint pain was my worst problem. Now, the joint pain is exacerbated by the tons of extra weight that's been piled on.
    I'm making the changes and I will combat this. It's not something that will be healed by diet and exercise. Even the doctor when I checked in for my Optifast program stated that he couldn't make it go away with this program. It's not a medication dependent disease. I am currently in remission between infusions of my medication which are every six months. Unless I stay in remission then I won't need another infusion. I don't take meds to regulate my symptoms ... there are no levels to be brought down. It is what it is and I just have to live with it.
    However, I am looking for people who might also have this condition and embarking on a major challenge such as significant weight loss.
    If that's you ... hit me up!!!
  • I do not have this and have never heard of it. I had to google to learn more about it. I am sorry to hear that you are dealing with this and hope you can connect with someone who can relate to what you are going through. I'm glad to hear that you are in remission, and hope it can continue for a long time.

    Good luck to you!
  • Thank you. Having the energy to move has been the biggest struggle so I am hoping that once I am lighter ... I'll be able to move a little more. I miss lifting weights so badly
  • How are you
    How is your journey going? I have some issues also.