midilance

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  • February 20, 2016 at 2:09 am

    I was diagnosed with CIDP in early 2008. My treatments from the beginning have been three a week on consecutive days for two weeks and then one week off. Then repeat. My nurse comes to my house around 8 in the morning and hooks me up. The treatment (30 grams of Gammagard) takes four hours. My nurse stays with me throughout in case I should have an adverse reaction. We watch TV I have gone through two ports (one went bad and now I am on a new one). After I ran out of veins, the port has been a godsend. This is not particularly fun to go through but what is the alternative. Fortunately, these infusions, over the years, have prevented my CIDP from spreading. That is a win. I hope this has been a help.

    February 10, 2016 at 2:00 pm

    I’ve been getting home infusion (Gammagard) since 2008 for my CIDP. My nurses have been great. This is typical out here on the West Coast. The insurance providers have found that it costs less than having to go to an infusion clinic.

    January 21, 2015 at 11:09 pm

    Jessica, I’ll tell you my situation in case it could help you. The doctor who diagnosed me is a world leader in neuromuscular diseases. He, and he wife, are directors of the Neuromuscular Department at USC here in L.A. He’s qualified. After a muscle biopsy, a spinal tap, and many, many blood tests he diagnosed me with CIDP. My schedule is: three consecutive days of IVIG in my home. The treatments last four hours each day. Two weeks on and one week off. Then repeat. After some early adjustments I have found that I feel no loss of ability before my next IVIG treatments begin. My insurance people thought my treatments were a little excessive and intervened. My treatment schedule got “thinned out.” I lost quality of use. Fortunately, when the treatments began again the use came back. Finally, they had to agree that my treatments were just what was needed. It wasn’t in my mind. I was diagnosed in early 2008. My problem is in my left hand and fingers. With treatments I have reached a level point. It’s never gotten back all the way back to normal. I’ve played sax all my life and no longer can. I’d be happy to speak with you if you feel it would be helpful to you. I don’t know how to get a phone number to you without broadcasting it to the entire forum.

    September 16, 2011 at 8:12 pm

    I weigh 175 and get 30 grams per day, 3 consecutive days a week for two weeks. One week off and then it repeats. I’ve had this regimen for 3 years. I understand that it is different for everyone.