As you read and learn about CIPD and IVIG you will see that every one is different and react different to treatment. For me after three years I give my infusion center the dates I want and need. I get mine every 28 days +\- one or two days. Any more and I lose ground. About a week prior I start feeling a little worse and up to a week after but then will be OK for the remainder. My guess it will take some time to find your groove.
The schedule for IVIG really is subjective to each individual, with many different factors involved. Body weight, type of CIDP (progressive v. relapsing/remitting), metabolism, etc., all play a role. My neurologist started me out at a lower maintenance dose and then increased it when I had flare-ups of pain, until my symptoms were well-controlled. I receive 60 grams of Gamunex every two weeks. There can be some trial and error involved, and sometimes what worked for a while may no longer work. To an extent, CIDP is a moving target. Your best bet is to educate yourself, work with your physician, and most of all — pay attention to how your body reacts to your treatment. The goal is for the most effective treatment at the lowest IVIG dose.
Every one is different. For me I require 28 days. If I miss this intervel I really feel the results, even one or two days. Also the premeds I get (Steroids) affect me and my moods. I am short with loved ones and other feeling. I have now been able to spot and deal with better. I wish it was easer but some day maybe.
I started IVIG 8/2005. I would receive 4 days in a row of IVIG I do not rememeber the dose. At that time they thought I had GBS. By about mid Sept. 2005 my sypmtoms returned so I received another 4 days. At that time my neurologist thought I may have CIDP but thought he would wait and see how I did after the 2nd treatment. About the 3rd week of Nov. 2005 my symptoms returned, I was dx with CIDP started on CellCept 1000mg 2 times a day and continued on IVIG therapy 60GM once an month until spring of 2007. At that time the length between IVIG infusions changed. I received 60 Gms IVIG every 5 weeks twice then every 6 week 60 GMs twice. I have been on the CellCept since Nov. of 2005. The first week in July was my last dose of IVIG. I am still taking the CellCept and I also take Lyrica 150mg 3 times a day.
I feel great, today I did an hour weight work out with a trainer and then did an hour of aerobic execise with weights. I still have the burning and numbness of my extemities and it gets worse when I over do it especialy if I am on my feet over 1/2hour, standing in one place. So I try to sit whenever I can.
I feel so forunate that this therapy is working for me so far. I feel my myelin has had time to regenerate with the 2 years of IVIG and the immunosuppression.
I hope this is helpful.
I was dx. with GBS Aug. 2005. At that time I was given IVIG 40 gms per day for 4 days in a row. It worked for about 30 some days then I would get weak again and have difficulty going up the stairs again I was treated with the same dosing. The same thing happened a 3rd time and I was dx. with CIDP started on CellCept 1000mg 2xs per day and given another 4 days of IVIG. That neurologist wanted to keep treating me like that. Wait until I became weak then treat me in hopes that the CellCept would eventually be enough, he to was concerned about the poss. side effects of the IVIG. That is not a very stable way to live your life. I was having a hard time scheduling work etc. I also questioned how healthy is it for your nervous system to keep having relapses with repeat destruction to the mylin sheath.
In Jan. 2006 I switched neurologist. I now get IVIG 60 GMs every 30 days. This works great so far for me. I am much more stable and I am able to work part-time as a nurse on my feet all day. I do experience more burning in my lower extremities on the days I work but maybe in time this will get better! I also take Neurotin 900mg 3x per day.
Hope this is helpful.