• Does anyone have MG with anti-LRP4 antibody and what treatment works

    Posted by nonna3 on January 28, 2025 at 2:37 pm

    I have recently been diagnosed with MG with this rare LRP4 antibody. I can’t tolerate Mestinon, and have been on Prednisone for over 4 months. It has helped somewhat with swallowing and breathing difficulties but it is hard for me to get much sleep. My vision is still blurry and sometimes double. Plus I have osteoporosis and Glaucoma and I know this medicine is not good for the long term so I am searching for effective treatments. My doctor said that the next step is IVIG, but I have read that it is not as effective with LRP4 antibody. Unfortunately, there is little research on my anti-LRP4 antibody and some of the typical MG treatments are not as effective. I would like to know if anyone has this rare antibody and if they have found an effective treatment. Also, I would like to know if there is some major University health center that has considerable experience with this antibody where I might get a second opinion. Thanks for any assistance.

    mary-s-browder replied 20 hours, 59 minutes ago 4 Members · 3 Replies
  • 3 Replies
  • bbb

    Member
    January 31, 2025 at 6:56 pm

    I was diagnosed in 2022 with LRP4. I am my neurologist first patient with this antibody. I have been on IVG since diagnosed. It really helps me. I’m now 75. I’ve had to get a port. IVG is rough on your veins I would suggest getting one. Headache is common which I’ve had. Going to try Periactin instead of Benadryl. I really feel good most of the time. I also had bulbar symptoms. If you have any other questions feel free to ask.

  • dad2fly

    Member
    February 1, 2025 at 9:57 am

    I was diagnosed with the LRP4 auto antibody a little over a year ago at the University of South Florida in Tampa, they have a great neuromuscular dept. I was on Mestinon for a while and had no issues with it but it only works for a few hours. I started on IVIG one year ago and it’s given to me every 14 days because it wouldn’t for the whole month. The biggest issue is the loading dose which is large over several days and is based on your weight, you must hydrate before during and after the infusion . You may experience a bad headache if it’s given to you too fast. It is given to you over 6-7 hours at first, hopefully at your home. IVIG was the only treatment for me and has given me back a somewhat normal life but it’s not a cure. Checkout “Lucid Med” on Youtube she has videos that breakdown the treatment and what to expect. Good Luck I know it’s a scary issue but I’m glad I went thru it, If you have any other questions let me know…..

  • mary-s-browder

    Member
    February 4, 2025 at 3:00 pm

    I was started on Prednisone and as that started working Cellcept was started and prednisone slowly weaned off after about 6 months. Then I had an exacerbation and IVIG was ordered I did that for a year but had ups and downs with it. Dr switched me to Sub Cutaneous IG which I did for three years and it kept me more stable with no ups and downs. I have since been weaned off Mestinon, Prednisone and SQIG and am on a lower dose of Cellcept.

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