Reply To: Anti-MAG treatment update
This must be the only Anti-MAG forum on the internet. Found another one but the posts ended several years ago. I know this a rare disease but hadn’t realized how rare.
During 2014 my symptoms started with numbness, shooting pains, tingling, etc. in the toes/feet which was misdiagnosed as Plantar Fasciitis and I was given custom-made orthotics and sent to PT. That seemed to help for my daily walks and I used the same orthotics walking inside the house.
But in 2016 during my physical I asked my new doctor (having changed health plans) about the problem since my toes/feet were becoming more numb. He ordered a host of blood tests. Abnormal results were found with igM > 102400 and abnormal light chain tests.
Then off to the neurologist for nerve conduction tests which showed slow nerve conduction in feet and forearms. Neurologist wanted to start me on Rituximab right away. But my primary care doctor vetoed the idea since only my feet were affected and I was still able to walk OK with the orthotics.
In Sept 2017, I returned to my primary care doctor after the anti-MAG started to progress rapidly during the previous 6 months. Now having some numbness in ankles, up to the knees, and all fingers getting numb; balance problems on uneven surfaces and stairs, slower walking, muscles beginning to atrophy below the knees, etc.
The doctor sent me back to Neurology but my Neurologist had just retired and was replaced by a young doctor who had studied Neurology at UCLA and USC. I was impressed…very sharp doctor. After repeating the nerve conduction tests from 2016, she confirmed that nerve velocities had slowed significantly with muscle atrophy; and reflexes, vibration, hot/cold, etc. senses affected.
The neurologist discussed treatment with Rituximab or IVIG. Prior I had done internet research and also contacted Mayo Clinic and found the most promising drug was Rituximab for Anti-MAG.
I also contacted polyneuron.com about their pipeline with an anti-MAG compound but that will be years off for approval. However, Phase II clinical trials will be available to those in the USA in conjunction with a neurologist in California. The response from Polyneuron was very helpful and the researcher said to feel free to contact them for updates and check their website. Thanks to Jim-LA for posting here about Polyneuron! That drug gives anti-MAG folks hope if it works effectively as a “sponge” to capture the bad guy antibodies attacking the Myelin coating, leaving the immune system intact. I shared the article with my neurologist and she was impressed with the drug’s concept and unaware of this potential anti-MAG treatment.
To make a long story even longer, the neurologist recommended a 6-month course of IVIG treatment every 3 weeks, with the first followup after 3 months. Her reasoning was that IVIG is considered “safer” if less effective and benefits shorter-lasting than Rituximab. So If IVIG is ineffective, I can try Rituximab. Had the first IVIG treatment over 2 consecutive days last week.
I will post here about any changes in my symptoms and treatment in the coming weeks. I look forward to “trading” info and experiences with other anti-MAG folks here since apparently we are such a rare breed.