Hi John,

There is a Facebook group called CIDP. It has 7,100 members. I have learned so much from others there. Great forum. It is also very useful for recommendations such as the one you are seeking.

Lynn

Sandra – Have you done plasma exchange yet? I’m in your boat in that the IVIg isn’t really helping with nerve function. I finished my 7th treatment yesterday. Still having big trouble trying to go from sit to stand. It’s very frustrating so I am looking into PE as well. Both men I met with CIDP yesterday, while getting my infusion, are getting it 5 days a week each month. I am doing 2 days (40 mg each day) a month.

For what it’s worth, I underwent treatment for Stage II, Triple Negative Breast cancer 5-2016 – 10-4-2016. I then did 30 rounds of radiation. So early stage, no metastasis. I was doing great until I took a fall in Jan, 2018, then another fall 3 weeks later. No warning, no pain, just fell down. During chemo, I felt a distinct weakness in my right leg. It was difficult to go up stairs. I figured it was the chemo but today my weak leg (by far) is my right leg. I went to an acupuncturist, then an advanced pain solution Dr. then finally my PCP referred me to a neurologist. Diagnosed with CIDP in June, 2019. What is interesting is that I have had a very mild case of Lupus for 16 years prior to my BC diagnosis. I had my ANA tested throughout the years to see if it was still in my system. I always tested Lupus positive.

When my Dr. did extensive blood testing in June, 2019, he said my ANA was negative meaning I don’t have Lupus. So, did it turn into CIDP with the chemo I received for BC? I don’t think I will ever know but it is very suspect.

One final item worth mentioning. I did tons of research into chemo before I began treatment. I got 3 different opinions, one being the Mayo/Jacksonville, Fl. All said do the chemo as Triple Negative is the only BC with no targeted treatment. It was a must. My biggest fear was getting peripheral neuropathy as a result. I did the Dignicap so I wouldn’t lose my hair, and I put my hands and feet on ice during each of the 16 chemo treatments. Research found said if I did this, I would minimize neuropathy effects.

Instead, I have neuropathy in spades. Besides my weak right let, I discovered I was no longer able to point my toes. Probably one of my very first signs of CIDP.

I pray everday they find a cure for those of us with CIDP, or a treatment that is more effective. IVIg helps but not to the degree I would like it to.

Lynn