For those whom have had a diagnoosis of CIDP and have been on IVIG for more than 6 months, I would like to know what dose and frequency works best for you. It is easy to see the recommended "product label" doses, but treatments have to be individualized. I started on Gammagard 1gram/kg (35 grams) for 5 non-consecutive days once a month (I couldn't tolerate the consecutive daily doses) for the first 6 months..For the past 3 months, I have been on 500mg/kg (50 grams) two consecutive days (that, I can tolerate better) every 3 weeks, although the overall dose ends up lower than the initial regimen. Both of these doses are consistent with the package insert.
However, I find that I have to wait almost a week to recover from the treatments in terms of strength, have a better week, then feel like I'm crashing again, awaiting my next dose. Yes, I know that peak and trough IgG levels would help, but I have chronic convalescent mononucleosis, which makes IgG levels uninterpretable.
Being a medical practitioner (inactive now), my neurologist is open to doing whatever reasonable regimen I request. I am thinking that the 100 grams over 2 days is making me symptomatic from the treatment, but that I am troughing quickly, and my body is unable to process the 100 gram bolus, wasting some of the medication. When I go back to my neurologist in about 3 weeks, I am considering requesting a dose of 65 grams - a one day dose every 2 weeks (which would be about equivalent in terms of overall 6-week dose, but smaller boluses each cycle, and less time to trough.
The package labeling is NOT an exact science, and everyone responds differently to treatment. I am interested to see what is working best for folks here in terms of both avoiding troughs, AND side effects of larger boluses. Thanks to those who share!
can't wait to see what people say.
Still pretty new to this whole disease process but currently 72.5 gms a day for 2 days every 3 to 4 weeks is tolerated fairly well. The 4 to 5 days after are flu like, painful days. This last was number 6 and some small improvements are being seen. Still cannot stand or walk.first reassessment after 6 month diagnosis and start of treatment is next week. Thoughts on medication adjustment? I have been hearing good things about CellCept.the Accupuncture 2 times a week causes a lot of symptoms that we feel are positive in terms of reducing tingling and helping with gastro and urinary symptoms. Hope this is helpful. Madonna
Mayberry, I was on GAMUNEX 5% for my first 3 infusions and was switched to PRIVIGEN 10% due to a rash that developed. I have been on PRIVIGEN for 8 months now. I weigh 170# and I'm given 35 grams everyday for 2 days in a row every 3 weeks. I feel weak and heavy in the legs a few days prior to treatment and a few days after treatment. I get tired during these times but I am able to function anyway, but I am more prone to stumbling and my gate falters when I'm tired. I have improved considerably with these infusions. I can now dance and run (looks like a clown though) where I couldn't before. When diagnosed, my Dr. told me I probably would not get better but he promised he could arrest progress. I have gotten much better and I feel like I'm 85% of where I was when symptoms were at their worse, albeit I still have dead feelings in my feet and my finger tips tingle. My worse malady is muscle deterioration to my thumbs, but I learned to work around that. My Dr. is amazed at progress. The root cause of my condition was high doses of Statin drugs over a period of a couple of years, otherwise my health is excellent, which may be why I am recovering so well, and I have 72 years in the bank. Good luck getting your doses to work for you.
Thanks to everyone for replying. Please keep responses coming- this is a learning process for all of us (including the specialists!). Hopefully, some folks can be guided towards different dosing/frequency regimens that will work better for them, although we all respond differently to various treatments.Be blessed!
I am just at the 12 months on IVIg mark (happy anniversary me....)
I am on a product from Baxter called KIOVIG Link here for tech data
I started on 5 days at 400ml/day (a loading dose). The first day was really slow and very controlled.
Since then I have been on 400ml/4 weeks (one dose of 400ml every 4 weeks). I have been allowed to split one 8 week period to 3 weeks and 5 weeks (out of town on holiday and that went OK.)
The first week was a little tough - I was at the worst level that (hopefully) I will ever experience. By day 5 I had an elevated temperature (from the exertion getting to the treatment??) and was almost admitted. But the temp went down, I got the treatment and have been going the up - down - up - down cycle ever since. I am not "cured" but I am not (as far as I can tell) getting worse.
I do have some minor side effects on treatment days (the worst is that I HATE needles). Minor headaches and minor nausea are nothing compared to being jabbed.... I have found coffee and nibbles during the process helps a great deal. Perhaps it is the sugar hit?
Conclusion - the product at that dose/time appears to suit me and is keeping me going.
I get two doses based on weight every 6-8 weeks. As an inpatient, run it over 12 hours, off 12 hours, then on 12 hours. I tried to wait 12 weeks, but broke my knee on week 11 due to a fall, so I’m back to the 6-8 week schedule.