Reply To: Frustration

June 28, 2012 at 5:08 pm

Ruffus, my heart is breaking for you I know exactly what you are going through. Whatever you do don’t stop visiting, when they know a family member is involved, they are a little more careful. About the prednisone, being that it is causing diabetes (was she diabetic before) maybe you could use that as proof she needs the ivig. If they do do the ivig again, now that she has the diabetes, you have to make sure they use a brand that uses glycine as a stabilizer, not sugars. Gammaguard and gammunex I know are safe. People with diabetes that get ivig with sugars as stabilizers can go into renal failure and end up on dialysis. For the fistula, they can use other immunosuppressants that might also benefit the cidp situation until ivig is approved. The only problem is some of them take 6 months to work???? I know they use remicaid but maybe they use cell cept as well. Some on the site use cell cept for their cidp. I have never seen remicaid used for cidp but it is a imunosupprressant so it is worth a try, at least something until the ivig gets approved. Could they use a phentynol patch for the pain? Keep us posted