IVIG Treatment – How Often?
-
-
August 5, 2006 at 4:52 am
How frequently do you guys get treatments? Does everyone get the 3-4 week cycle, or are there others that only get IVIG intermittently? After my first treament, my neurologist is recommending a wait-and-see approach — as in wait for symptoms to worsen before we continue. My sympoms are very mild, with the exception of my right foot which was paralyzed but now has the same strength as my left foot (which is not great, granted!) after one treatment.
-
August 5, 2006 at 5:19 am
Hi Meadow,
I started at every 5-6 weeks two years ago, but now every three weeks. Everyone is different, but I think it’s best to get on a regular schedule. To
some extent we all must trust our doc. to properly manage our treatment. But remember we are ultimitly responsibile for our own health. Relapses are hard to predict and target what may cause them. GOOD LUCK!!!!! -
August 5, 2006 at 7:04 am
Hi, Meadow.
After an initial two days every two weeks for twelve weeks which stopped the initial relapse, my neuro took a wait-and-see approach as well, and I didn’t need IVIg again for a year. The problem is, as Terry mentioned, the way the disorder is going to affect each individual is hard to predict. You’ll have to take time (a year isn’t too long) to learn what your body’s doing–you’ll find a number of us will recommend that you keep a journal of symptoms, problems, treatments and benefits to look for patterns. In the past six years I’ve learned enough about CIDP and my own personal case that my neuro now leaves scheduling treatment to me.
Keep fighting.
Deb
-
August 5, 2006 at 9:46 am
Thanks for the replies. I have started a journal since I learned I have CIDP, this is really good advice. The whole thing is maddeningly unpredictable for me — I like to have my ducks in a row, so to speak, and, well, my ducks are floating all around the pond right now!! My neuro suspects that I may also have charcot-marie-tooth in addition to CIDP. I saw 3 neurologists yesterday at Hopkins — the third one stopped in just to see what was going on and declared my case “weird”. hm, evidently I am being discussed. My electrical tests were as bad after treatment (2 weeks post), despite the fact that I can move my foot. 4 more days until the genetic tests for cmt are back. I could not pry a plan out of my doc beyond lets see what these tests tell us, and we may need to do a nerve biopsy to get to the bottom of this. Wait, wait, wait. Argh!
-
August 5, 2006 at 12:57 pm
I am on a 4 week IVIG schedule, some have a shorter schedule and some can go longer. It is usually a case by case basis. Your Neuro must be trying to figure out what schedule will work best for you. Hopefully you can get on a consistent schedule once that happens.
Jerimy
-
August 6, 2006 at 5:11 am
Hello to all. I was diagnosed with GBS in 1990 and after years of suffering chronic fatigue new medical exams and visits diagnosed CIDP this february 2006. My first IVIG treatment was in april and after that a slow recovery came…just until last week, on July 29th I had a relapse episode that took me straight to another IVIG treatment. Every three months? 🙁 Honestly I thought it would’ve kept me “preppy” for longer. My neuro suggests I monitor my strength (and weakness) to program future IVIG treatments. Prednisone is now my daily meal… we’ll see what the future beholds! 😀
Thank you all for the gret info on this forum. I am sure learning a lot about CIDP!
Nancy (Italy)
-
August 6, 2006 at 8:47 am
Since February 2000 I have been on a schedule as often as 2 times per week. Originally, I was on a schedule of once a week. Whenever I have reduced frequency, I have had an increase in weakness.
However, I began rituxand infusions almost 1 year ago and now have rituxan once every 2 months and we have just reduced the IVIG frequency to once every other week.
-
August 6, 2006 at 9:17 am
Clearly we are a diverse group! I feel a bit better knowing that my doc’s approach is normal. I’m heading to the gym today — first time since May — ykes! Someone mentioned that this is a good way to measure change, which really resonated with me. Not sure if I hadn’t been working out before that I would have realized how weak my wrists and ankles were becoming. Thanks for your help with this — this is a very supportive support board!!
-
August 6, 2006 at 10:07 am
Emi is getting treatment twice a week. During a relapse she gets IVIG 3 times a week for 2 weeks. I’m trying to work out a better schedule with the dr for the relapses.
We’re hoping that in the next few months that we can get her down to 1 treatment a week. I think if we can treat the relapses before they happen that we have an excellent chance of getting there.
Like everyone else has said each case of CIDP is different. There really is no set treatment for it.
Kelly
-
August 6, 2006 at 10:26 am
Kelly
I just want you to know that I have a son (14 now) with type 1 diabetes and hashimotos. Now that I’m on the other side of the fence, the one with the yucky condition, I can say with absolute certainty that its worse being the parent of a child with a chronic disease than it is to have a chronic disease yourself! I hope you find workable solutions for your daughter. Actually, I hope the medical community simply finds a cure!!
Helen -
August 8, 2006 at 5:26 pm
Hi Meadow,
When I was first diagnosed almost 5 years ago, I got infusions every 4-5 months, then every 3-4 months. Then every 6 weeks; I am now at every 3 weeks, but I can tell that I will soon need to change the timing again, as by the second week, I am starting to fall down again, and have no strength.
We are all different, and it all changes for everyone, on top of that! Best of luck to you. Jo Marie
-
