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Does anyone have MG with anti-LRP4 antibody and what treatment works
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.
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8 Replies
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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.
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Thank you so much for sharing your experience. I have been on prednisone for 5 months since my diagnosis and it has helped but I am having difficulty sleeping even with the reduced amount. My doctor says the next step is IVIG but I have read that it isn’t always effective with the rare LRP4 antibody but works with the AChR antibody better. It looks about 5 years for me to get a diagnosis and I’m 77 years old. I have ocular, swallowing and some breathing effects that are most problematic. I have heard of some doctors using different treatments for our antibody and I wondered if anyone has tried them. My doctor has not suggested CellCept and I am unfamiliar with it. I am planning on getting a second opinion about treatment options at Johns Hopkins even though I have a wonderful neuromuscular doctor at Rush in Chicago.
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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…..
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Thank you for your reply and I will check out the video you suggested. I want to learn as much as I can about treatments because I know this anti-LRP4 antibody is so rare with MG. I was unable to tolerate Mestinon so I went right to prednisone, which is not great since I already have osteoporosis. If you know of an MG center teaching hospital with some experience with successful treatment of MG with the LRP4 antibody, please share that information because I would be willing to go anywhere to consult with someone that has treated this rare antibody.
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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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Thank you for your response. I am unfamiliar with Cellcept that you are now taking and wonder if it is an IV or pills and does help with the LRP4 antibody and symptoms such as swallowing and ocular problems? If the subcutaneous IG helped, is there a reason that you stopped? I greatly appreciate you all sharing your experiences with me. It feels like such a lonely disease and, especially, when the majority of research is targeting the most common MG antibody and not the LRP4, which isn’t always as responsive to the same treatments.
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What is that antibody you are talking about? Does it look like any of these? I’ve been on Mestonin 3 X daily and IVIG once every month.
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There is a rare MG anti-LRP4 antibody (low-density lipoprotein receptor-related protein 4) that is the most recent MG antibody to be identified, and there is a special blood test for it besides confirmation with an EMG and single fiber test.. Maybe it was discovered 3 or 4 years ago. Most people with MG have the AChR antibody (85%) and then about 10-13% have the MuSK antibody and about 2-3% have the LRP4 antibody. Some people have a combination of these antibodies but they all cause MG, only some function differently in our neuromuscular communication pathways. The problem for those of us with the rare LRP4 antibody is that we sometimes don’t respond as well to the more common therapies. Most neuromuscular specialists haven’t even treated anyone with this antibody. Thanks for asking.
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