Hey Country Girl. I was DX'd with CIDP in 2012 and just did my 25th IViG yesterday (every 4 weeks) I am also on a 'starting dose/taper dose' of prednisone for 5 days at infusion time. I can honestly tell you that yes, I have improved. However at the same time, I have had to adjust my life and my expectations. My life is back, just different. Hang in there, be patient.
I have IVIG infusions M W F may talk to DR about prednisone but I reacted to it when I was younger. Thank you
Bob Button said:
Hey Country Girl. I was DX'd with CIDP in 2012 and just did my 25th IViG yesterday (every 4 weeks) I am also on a 'starting dose/taper dose' of prednisone for 5 days at infusion time. I can honestly tell you that yes, I have improved. However at the same time, I have had to adjust my life and my expectations. My life is back, just different. Hang in there, be patient.
My relapses are gone and I now have a 90% remission of CIDP. I get 120 grams of IgG every two weeks.
I have tried various doses starting last October. Stay with it. Ask them to up the doseage. IgG is very benign, it is the infusion rate, days or hours between infusions and the people who administer it that can makes all the difference in the world.
I just spent five miserable days in a hospital because an incompetent nurse increased the infusion rate without asking me. Her mistake created a cascade of body reactions that almost killed me. Fecal compaction really can kill you.
We also had a hurricane here that scrunched my infusion schedule. So be your own advocate!
Hey Country Girl…
you’ll find a wide variety of drugs being used because we are all so different. Isn’t diversity grand?
Plasma pheresis ~ 7 treatments 2 years ago and mycophenolate and prednisone ever since have been pretty effective in bringing me from complete and total paralysis from the neck down to kinda sorta normal. Well, there was an awful lot of physical and occupational therapy and weight lifting too.
Current doses:
2000mg myco and 20 mg pred. / day
Have tapered the pred down to as low as 5mg with lousy results.
Talking to my neuro about another
slam of Plasma Pheresis.
I was diagnosed in Feb 2014 and had 3 days of plasma exchange and high doses of steroids. After a month of no improvement doctor added PT and started on trileptal. After another month with small improvement in balance, but not pain, I was started on IVIG. I have 500 ml over 48 hours every 8 weeks. Saw some improvement with the first treatment, even more with the 2nd treatment. I have my 3rd one Wednesday. Hopefully I will continue to see improvement to where I can give up the walker and not be so fatigued. I still have the pins and needles weird feeling in my feet and lower legs that hasn’t eased up. Learning that this is the new normal and have to readjust my lifestyle. Hang in there, it should improve with time.
I was in the same boat as you my friend.IVIG treatments did nothing for me I had 10 treamenets.Don`t be afraid of steroids.They have left me in complete remission.Prednisone worked for me.My only side effect was some weight gain,which now I am losing.I have been off ALL medication for 3 months.I`am back to playing golf almost every day.riding my bike.doing a lot of walking.Life is good.Its worth trying.I remember those days not that long ago where I was days away from being stuck in a wheel chair.Needed a walker full time to get around.Hopefully I won`t relapse.Knock on wood.
I began today plant steroids I am taking them until Tuesday when I see neurologist. I noticed today I could lift leg that has not responded. If I notice positive change over 4 days I will talk to Dr and ask about seeing my naturopath form compounding for me and procedure to follow. I will not let CIDP win.
Country Girl, the next steps are to try steroids and plasma exchange. If those don’t work then Rituxan is definitely something to consider. It worked for my partner when nothing else did.
I am trying plant steroids and will consider plasma exchange next. What is Rituxan? I did notice last night in bed my legs moved easier but not so good this morning. Thank you Terri.