Unsure about treatment
AnonymousNovember 20, 2006 at 4:34 pm
I was diagnosed with CIDP in April of this year and have received three IVIG infusions with no great effect. Have been on 60mg prednisone since July and this seems to have slowed the progression in my lower extremeties but very unsteady on my feet. My hands and lower forearms are amost completely numb and useless. I also take lyrica, amitryptyline, opiates for pain and imuran for Crohns disease. My question is twofold: 1. Do the three IVIG treatments seem to be an adequate attempt to discern the effectiveness of this treatment? 2. I am considering trying to secure an appointment with the neurology department of the Cleveland Hospital. Has anyone had any experience with this clinic and how does it compare to Mayo in MN?
Thanks. Morris from Fountain, CO
AnonymousNovember 20, 2006 at 6:10 pm
This is all just my opinion. I don’t think 3 infusions would be enough, “usually” you start with a larger then usual dose over maybe a 5 day period, then a scheduled infusion weekly or every 2 weeks, then finally every 4-6 weeks. Everyone gets different combinations of treatments depending on what works, that sure doesn’t seem like it would be adequate. I think you are wise to try and get into Cleveland Clinic or Mayo for a second opinion, they are two of the best and I have heard great things about both. Good luck, my prayers are with you.
AnonymousNovember 20, 2006 at 10:08 pm
Im a GBS’er, not CIDP’er, so I’m just regurgitating what I have heard on previous posts.:confused: (Maybe Jer or someone else can confirm 😀 ). With regard to the effectiveness of IVig …… Some people do not respond to IVig, and those who havent, may respond quite well to Plasmapharesis, even though Plasmaph. is more ‘invasive’? If I recall correctly, there are those who dont seem to resond to either one of the above, but do however seem to be doing well on Rituxan (sp?). I know I have read posts in the past where Rituxan has done wonders ….. but I dont want to be someone who pushes uneccessary treatments.
AnonymousNovember 20, 2006 at 10:21 pm
I went to Cleveland Clinic and saw Dr. Tsao. He seemed extremely knowledgable about CIDP and GBS. The clinic was fabulous!! Very helpful and very organized!
He has me taking IVIG every three weeks- two consecutive days.
Plus, he now has me on CellCept to lower my immune system. He will slowly “wean” me off the IVIG to see how my body reacts so that I will ideally only be on CellCept.
I have to be extra cautious with CellCept with infections now. Makes life interesting, since I’m an elementary teacher.
AnonymousNovember 20, 2006 at 11:53 pm
I just wanted to add that one of the important purposes of IVIG’s is to try to CONTROL the progression of CIDP and the fact that you don’t feel improvements or stronger, does not mean it isn’t working. I was receiving IVIG’s from 1999 to 2003 and most of the time I usually didn’t feel stronger, but I always felt stable (no better but no worse). I felt like water was being dripped into me. MY PROGRESSION IS UNDER CONTROL NOW, I show no sign of relapse.
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