Hi All: It is great to have such a blog! It is very interesting to read all of the inspiring stories and how hard we are all working to get through this horrible disease.
I am currently on my 3rd treatment of IVIG and haven't seen as much improvement yet in my walking just the hands more. How long does it usually take to see results?
Thanks in advance!
My first 4 day treatment was at in Feb with Privigen which didn’t go well as I developed hemolysis. My dosage is 0.4 g per ml so about 120g.
Therefore, they decided to spread out the 120g over 4 weak period so I just completed technically the 2.5 treatment. It is goig with zero side effects and I ask for it to be infused at the slowest rate so 50ml per hour so it takes 8 hours per infusion approximately. Which I am perfectly fine by.
I do daily 2 liters of water, fruits, vegetables, zero red meat And stretches and some light exercise.
Like I said I am noticing some improvement on my hands and feet just beginning to see and others have told me also. But when neuro tested my strength on feet he said still weak. So he said give it another few weeks as too early to see improvement. This Is why I posed the question.
He has me on an Australian brand called Intagram which you probably won’t find online but commonly used here in Asia apparently.
Thanks for all the info all you said thankfully I have read before. I feel like I am a CIDP encyclopedia haha. I have been reading on CIDP like a research crazy project.
It would just be nice to hear how long it took others and yes, I know we are all different.
Hey Ben,
I started seeing progress in my legs and arms after my third day (of my initial 5 day doses). It took about a week for the numbness in my hands and feet to go away.
Hi Ro land thanks for the response. That’s great that you saw response so quick. Are you in remission now or still getting treated?
I still get treatment every 6 weeks.
ben said:
Hi Ro land thanks for the response. That's great that you saw response so quick. Are you in remission now or still getting treated?
It can be frustrating to get answers about the particulars of treatment, responses etc because "everyone is different".
So, with that said, for me, IvIg seems to work this way. Granted, I'm only 2 weeks past my second treatment but my response is ever-so gradual. I felt worse for a week after my first loading dose. Then over a week, I went back to feeling how I felt before the infusion. Then for a week I felt a little stronger and my pain was a little less intense. I did not have the "I woke up one day and felt alot better" experience. After my 2nd treatment, it was the same, but more abbreviated. I felt worse for a few days, then went to pre-infusion feeling for a few days, and now feel slightly better. I can climb stairs a little more easily, I have a little energy at the end of the day and the lidoderm patches feel more effective. Stil along way to go until I run or jump, but I think I'll eventually get there.
Not to hijak a thread but does anyone else use ice packs? they are one of the onlly things thattake the burning neuropathic pain away.