• Community Member

    Member

    You are the first post I have read that also has the anti-LRP4 antibody and I have been diagnosed about 5 months ago. I wondered about treatments prescribed to you because I have been on prednisone only 5mg for over 4 months and began to have difficulty sleeping with agitation and strange sensations in my body caused by the prednisone. So my doctor has just gradually reduced it to 3mg and I don’t know if I will have worse symptoms now. I have osteoporosis and Glaucoma so I would love to get off of the prednisone and I cannot tolerate Mestinon. I wondered if there was a University Health Center that had considerable experience with treating our MG antibody where I could get a second opinion I have heard that Rituximab is a treatment that has been used but my doctor said I am not sick enough to prescribe it, plus it would be used off label so I doubt that Medicare would cover it. My doctor did say that the next thing to try with me would be IVIG and I am willing to try it but I have read that it isn’t always effective with the LRP4 antibody. It’s not good to have the rarest of the rare diseases. I’m searching for some place to get a second opinion if they have successfully treated LRP4. Any assistance appreciated.