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Is anyone suffering with Anti MAG neuropathy?
My husband was diagnosed 1/2 years ago and the disease is progressing. He was taking Gabapentin and has just started lyrica. In addition he will be starting IVIG treatments.
We would benefit from anyone s experience.
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@mamacwb I have had anti-mag pn since 1991 and have not found an effective treatment for the disease. My neurologist recently prescribed Vyvgart which I understand is FDA approved for CIDP. Protocol is one injection of the stuff every week for four weeks. My last shot will be next Tuesday. So far, I have not noticed any change in pain level. Recently, I found medical articles that, as best as I can understand them, say that there is anecdotal evidence that there have been a few cases where treatment using BTK inhibitor therapy (ibrutinib, zanubrutinib, or acalabrutinib) has produced some pain relief caused by anti-mag pn. BTK inhibitors, however, are not FDA approved for anti-mag pn and the use of the drug for anti-mag pn is definitely an off-label use. For pain, I take the daily maximum dosage of gabapentin and tramadol. However, these drugs only take the edge off of the foot pain. Good luck. Walter Cooke
I have not heard of this Anti Mag that causes Neuropathy. My Mom, who is 97 has been complaining about her leg Neuropathy for a few years now. Not one of her doctors can tell her how to treat it. All they say is, “well, she’s 97 years old and those things just happen”. Nonsense!! There has to be something they can do for her. She’s begun falling now and she lives in an Assisted Living Facility, independently. She won’t go to Assisted Living, she’s adamant about it and wants to continue to live on her own. How can she when she continues to fall. She will break a bone one of these days and then she’ll just be in bed! Does anyone have any suggestions on how to treat this? She’s seen all of her doctors and not one of them has helped her.
@laporta
Hello
What are your symptoms?
Do you have difficulty walking and is it progressing?
Have you had any treatment?
Thank you for sharing!
@positivehealth I have numbness and pain in my feet and fingers, but I also have issues with leg and arm pain. I am getting IVIG every 3 months, and my neurologist has just increased my Lyrica 50 to 3 times a day. These are helping but I am concerned about progression, how long I have had this, does anti MAG affect internal organs? I had surgical removal of a lung cancer tumor that did not need further treatment other than frequent ct scans. She has referred me to hematologist who I see next week. I feel overwhelmed and worried about future debilitation. Thanks for responding
@mamacwb
Sorry to hear about your condition
It appears it is helping
How long have you been treated with IvIg?
Any side effects?
Thank you
I have a question on Neuropothy. My husband has Waldenstrom’s and Neuropothy. He was treated through Dana Farber. His results were good.
He has Neuropothy without pain. He cannot feel his feet although when I’ve tried to message his feet he reacts like I am tickling him. I find that feeling odd concerning what he says about no feeling.
Also when he elevates his feet the discoloration in his feet seems to subside.
Wondering what we can do for improvement.
Thanks in advance!
@positivehealth about a year with no side effects
@mamacwb
Is IVIG helping with numbness is your feet and your leg issues?
So many articles indicate IVIG is not that beneficial for anti mag or only positive results in small percentage of people being treated.
Appreciate your input!
@mphaddican Unfortunately, I do not have any suggestions for your husband. But who was his doctor at Dana Farber? I suffer from anti-mag pn and Waldenstrom's and am trying to get an appointment at Dana Farber. These diseases are so rare and unusual that I have found it very difficult to find doctors who are knowledgeable about these afflictions. Thanks in advance. Walter Cooke
@wcooke
Walter,
Thanks for your response.
My husband went to Dana Farber in 2020 and had a bone marrow test and lots of vials of blood were taken. They found he had the CXCR 4 mutation which 40% of people with WM have so his infusions were adjusted for that difference.
We were able to come back home, New Orleans, for the treatment. Dana Farber group prepared the medication and Ochsner administered it.
There is a specialist at Mayo who deals with WM. We have to look him up again but I am sure someone there can give you his name.
If I find it will send. He deals in research I think.
The physician at Dana Farber is Jorge
Castillo.
Hope you connect with someone. My husband’s IGM score has been normal after the treatment. Hopeful!
Just Neuropothy still dealing with.
Marylyn