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Has anyone had IVIG Infusions for Neuropathy?
Neuropathy | Last Active: Oct 3 7:57am | Replies (491)Comment receiving replies
I just had 5 days of IVIG which was prescribed for CIDP (chronic inflammatory demyelinating polyradiculoneuropathy). Survived it but am still skeptical. The people I met there said they had tried stopping the treatments and their symptoms became much worse. Most did not feel that their condition had improved. It is difficult to not be skeptical. Has anyone on this list been treated with IVIG for CIDP? I know that CIDP is challenging to diagnose and I had been infected with Lyme disease while I lived in PA. I was treated with doxycycline each time and after moving to TX had problems which I was told was post treatment Lyme disease (PTLD). This time I was treated with doxycycline again and thought I was over it. Doctors in TX are in denial about Lyme disease even when told I lived out in the woods in PA. It is hard to know what to do. We have considered moving back to MD and Johns Hopkins in Baltimore is doing a lot of research on PTLD which might help me if they accepted me as a patient. Has anyone gone to Johns Hopkins for treatment of Lyme or PTLD?
Replies to "I just had 5 days of IVIG which was prescribed for CIDP (chronic inflammatory demyelinating polyradiculoneuropathy)...."
I was diagnosed with probable CIDP two and 1/2 years ago, after having progressive neuropathy in one leg for over 30 years. Being over 75, the doctor did not recommend a loading dose, but just recommended a relatively low dose (0.4g/kg) every three weeks. It has definitely helped; without it, I'd probably be in a wheelchair by now. I have had two annual evaluations since starting, and each time they have found definite improvement in strength. So it works for some people. I hope it works for you.
My husband had fallen a few times due to what he called "Jello Legs". He had many blood and imaging tests. The results: low creatine, iron, vitamin B6 and high THS, ferritin (1,309), Kappa Free Light Chain (40.6), copper and haptoglobin. All of which didn't provide an answer. The neurologist then did an electrodiagnostic study, where he is poked with needles & electric current. This test she said met the criteria for a multifocal demyelinating neuropathy. Next step, like you 5 days of IVIG for CIPD. Also like you skeptical because 3 weeks out from the treatment and my husband feels no better. If anything more tired. Curious to know, what were your symptoms...good luck !
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Hello,
Sorry to hear you have been diagnosed with CIDP. I also have CIDP and have been receiving IgG infusions for almost six months. I truly do find improvement for a couple of weeks and a few days before my infusion symptoms return.
I think with this diagnosis this is the best it will be. I also find when I eat healthy foods with large amounts of fruits and veggies I feel much better. I also have physical therapy twice a week and walk 2 miles a day. I have been seeing rheumatology and just started on an immunosuppressive therapy. I hope things get better for you.