AnonymousMay 27, 2006 at 2:37 am
I´m was dx cidp jan 2006 and had my first IVIG 5*30g in march. Felt a little better but no miracle. Is it possible that one has to have repeated treatments to see any effect? Or does this mean that I should change treatment, steroids?
Thankful for any ideas or experiences!
Greetings from Sweden!
AnonymousMay 27, 2006 at 3:29 pm
I was dignosed sept 05 with cidp we first tried ivig without pretreat and i got severe headaches so we swiched to plasma exchange i did that thought the holidays about every 6 weeks but did not see a whole lot of improvement.then my nuro sent me to WVU ( I live in West Virginia ) to see another nuro there. she admitted me the same day and i recived IVIG for 5 days but she pretreated with bendryle and tylonal and i was fine. but i really did not see a big improvment from that either. so i came back home to charleston and we have been doing IVIG for the last 5 weeks, 2 tiomes a week and i have another 3 weeks to go.
so to makle a long story short i have been doing this since march and i do not see any improvment at all.
but that is me, you could do the same thing and feel great, we are all different and every case of cidp is different.
i hope this helped
AnonymousMay 27, 2006 at 5:48 pm
First off, IVIG does not always make you feel stronger and better, another very important reason is to try to control the progression, if this is accomplished you can start to heal.
Usually, when you first have it done, an aggressive series is given over a period of five days. After that, your doctor will put you on a maintenence. When I was having infusions, my maintenence was one day, every two weeks.
AnonymousMay 27, 2006 at 9:52 pm
From what I have seen so far when I go into the hospital for my once/3 week infusions is that lots of people get IVIG, for lots of reasons and with varying degrees of improvement. For some, it keeps things at bay and for others, just slows progression.
I started having symptoms about 2 years ago, but was only officially diagnosed last Fall. At that time, I was a weebit weak but my major problems were my numb/hot/tingling/achy hands and feet… BUT my health got worse in a hurry. By Christmas, I could hardly take care of myself any longer. I could only stand for minutes. Stairs were a nightmare. I could hardly push myself to a sitting position when in bed. I was crashing into walls, etc…. It got to be pretty bad and I was worried things would just keep getting worse. I had not yet started treatment as we were waiting on final test results. I was depressed and fearful that treatments wouldn’t work.
When I had seen my Neurologist mid-November, I was still quite ok, but by the time he saw me Jan. 5th, he couldn’t believe how much worse off I was since the last visit and I started IVIG on Jan. 9th. I had 3 days at 60 per day. When they sped up my infusion rate, I got sick… BUT by Jan. 13th, I was walking SOOO much better. I could even walk on tiptoe. I got stronger over the course of the week and so we went to a course of 1 day every 3 weeks. [I]By Feb. 14th, I was able to go back to teaching some of my low impact fitness classes[/I].
***Before starting IVIG, my Neurologist did “warn” me that though IVIG had a good chance of improving my situation, at that time, he said it was probably unlikely that IVIG alone would do the trick. I have been SOOOO lucky that this MIRACLE IVIG has worked so incredibly well for me.***
This summer, we’re going to try to go to once every 4 weeks and for all I know I might encounter problems, but I’d like to get my miracle IVIG just a little less often. I understand that for some people, it can take a while to get the correct amount and time between infusions.
I wish you luck in finding your correct treatment(s). Take care.
AnonymousMay 29, 2006 at 3:18 pm
keep in mind IVIG clinical trials showed that Ig levels spiked post treatment at over 10 times normal for about 48 hours and then tapered slowly back to normal in around a 28 day cycle. therefore, IVIG at about every 3 to 4 weeks seems to be the norm for most folk with aggressive CIDP. then there are those of us who have to buck the system and get the infusions as often as twice/week. the schedule that works best for each individual has to be discovered by the neurologist doing the treatment and everyone is different. There are some out there on less frequent dosages than 3 to 4 weeks stretching it out to several months so there is a wide variation. 🙂
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