"Re" Loading dose of IVIG?

    • October 2, 2013 at 2:24 am

      How many of yall have done repeat loading doses of IVIG after a while? It’s been 2 years since I had my loading dose and I go every 3 weeks now.. should probably be sooner, but it’s hard to do it every 2 weeks.. In the beginning IVIG made a HUGE difference, it was amazing, and now it helps, but not like it used to – would a loading dose help “boost” it all? Thanks and I Hoep everyone is doing well!!

    • October 13, 2013 at 9:09 am

      anyone have any thoughts on this? My dr now is saying I can do 100 grams in 2 days (my maintenance dose is 50g).. I plan on doing this in a couple of weeks.. curious if this is normal?

    • Anonymous
      October 13, 2013 at 9:55 am

      Really taking it depends on the ability of each person. You do not have to go there regularly. Do not tie ourselves too. Never mind. I also like that you. It’s mind right.

    • October 13, 2013 at 4:22 pm

      I don’t know if relating my expierence will help with your decision but here goes. I’ve had two 5 day loading doses of IVIG since my diagnosis in February 2013. The intial dose and then again in April after a relapse. I have since been on IVIG on a changing schedule. My neurologist adjusts my schedule to fit how well I feel and according to the results of my latest EMG. So I’ve been on 30gm twice a week every other week and then 30 gm once a week every other week. I recently relapsed again (after being taken off Prednisone),and my dosage and the frequency were increased temporarily. I had three treatments of 45gm in one week, and I now recieve 45gm IVIG twice a week. I tolerate the IVIG very well. I agree with you. I feel that the IVIG does not work quite as well as it did intially. In my case this is due to the fact that I am doing so well. Changes now seem to be so subtle. This latest round however has improved the sensation in my feet to the point where my soles are actually ticklish! I was beginning to believe that I would always have neuropathy in my feet. Now it seems I may actually have normal sensation again someday. I’m sure this won’t help, but I don’t think there is a normal. We all respond so differently to the treatments we are given. If you feel you are at a standstill in your recovery only you and your neurologist can determine what may best benefit you. If you tolerate the IVIG, then trying the higher dose may actually make you feel better. Increasing the dose in my case appears to have improved my neuropathy. This is only my expierence however. I am now waiting for the results to my latest EMG to see where we go from here. Wish me luck!

    • October 14, 2013 at 1:43 am

      yes Bny as long as you are young and healthy (other than cidp) it is okay to get the loading dose in two days instead of 5. I did it that way for over two years with no side effects or problems.

    • October 14, 2013 at 4:54 pm

      For what it is worth. I did IVIG at 4 week interval and did a 5 day load every 18 months for years. The load would get me back to where I was normally on the 4 week. I now have progressed to a 18 week interval but then had a big relapse and once again a week ago did a load. I am now 80% of where I was and headed up. My Neuro wants me on an interval where I am symptom free and this means I may have to do a load once in a while. Been doing this for 19 years.

    • October 30, 2013 at 3:47 am

      Thank yall so much – so I just had IVIG 5 days ago (I ususually do every 3 weeks), and I will get a loading dose next week – so less than 2 weeks apart and I’ll get 100grams (my usual dose is 50grams – I weigh 130).. I sure hope it works… I feel like I have been on a bit of a decline and I worry if it doesn’t work what that means.. especially without being a firm diagnosis. ugh!

      Bill – 19 years – WOW – how are your veins?? Do you have a port? My veins hurt for a few days afterwards – like a chemical vasculitis/irritation.. it will hurt all the way up my arm and neck and my leg on the side I get infused.. it’s uncomfortable. you ever had that?

      Lori – how are you?? I’ve been away from here for a while – you still doing rituxan?

    • November 10, 2013 at 5:24 am

      well, “re” loading dose done!!!! I’m doing better than I would have thought – but i’m sure it has something to do with the fact that I have drank more water this past four days than I usually do in a three week period! I’m sure hoping in a few days I notice a dramatic improvement like I did 2 years ago!!!!