# IVIG Dosing and Frequency **URL:** \ **Category:** General CIDP Discussion\ **Created:** [May 20, 2013, 4:19pm UTC](https://forum.livingwithpolyneuropathy.org/t/ivig-dosing-and-frequency/366 "2013-05-20T16:19:21Z")\ **Posts on this page:** 8\ **Page:** 1
**Author:** ![Mayberry](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/mayberry/32/260_2.png) [@Mayberry](https://forum.livingwithpolyneuropathy.org/u/Mayberry)\ **Post date:** [May 20, 2013, 4:19pm UTC](https://forum.livingwithpolyneuropathy.org/t/ivig-dosing-and-frequency/366/1 "2013-05-20T16:19:21Z")
**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! ---
**Author:** ![Scott\_O](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/scott_o/32/4_2.png) [@Scott\_O](https://forum.livingwithpolyneuropathy.org/u/Scott_O)\ **Post date:** [May 22, 2013, 4:52am UTC](https://forum.livingwithpolyneuropathy.org/t/ivig-dosing-and-frequency/366/2 "2013-05-22T04:52:21Z")
can't wait to see what people say. ---
**Author:** ![Madonnart](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/madonnart/32/454_2.png) [@Madonnart](https://forum.livingwithpolyneuropathy.org/u/Madonnart)\ **Post date:** [May 22, 2013, 2:46pm UTC](https://forum.livingwithpolyneuropathy.org/t/ivig-dosing-and-frequency/366/3 "2013-05-22T14:46:22Z")
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 ---
**Author:** ![Skiptech](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/skiptech/32/307_2.png) [@Skiptech](https://forum.livingwithpolyneuropathy.org/u/Skiptech)\ **Post date:** [May 27, 2013, 11:28pm UTC](https://forum.livingwithpolyneuropathy.org/t/ivig-dosing-and-frequency/366/4 "2013-05-27T23:28:26Z")
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. ---
**Author:** ![Skiptech](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/skiptech/32/307_2.png) [@Skiptech](https://forum.livingwithpolyneuropathy.org/u/Skiptech)\ **Post date:** [May 27, 2013, 11:29pm UTC](https://forum.livingwithpolyneuropathy.org/t/ivig-dosing-and-frequency/366/5 "2013-05-27T23:29:58Z")
Skiptech said: > 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. ---
**Author:** ![Mayberry](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/mayberry/32/260_2.png) [@Mayberry](https://forum.livingwithpolyneuropathy.org/u/Mayberry)\ **Post date:** [May 27, 2013, 11:45pm UTC](https://forum.livingwithpolyneuropathy.org/t/ivig-dosing-and-frequency/366/6 "2013-05-27T23:45:27Z")
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! ---
**Author:** ![Michael\_C\_S](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/michael_c_s/32/221_2.png) [@Michael\_C\_S](https://forum.livingwithpolyneuropathy.org/u/Michael_C_S)\ **Post date:** [May 29, 2013, 10:34am UTC](https://forum.livingwithpolyneuropathy.org/t/ivig-dosing-and-frequency/366/7 "2013-05-29T10:34:50Z")
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](http://www.baxterhealthcare.com.au/downloads/healthcare_professionals/cmi_pi/kiovig_pi.pdf) 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. ---
**Author:** ![DocMac](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpolyneuropathy.org/docmac/32/320_2.png) [@DocMac](https://forum.livingwithpolyneuropathy.org/u/DocMac)\ **Post date:** [May 29, 2013, 8:22pm UTC](https://forum.livingwithpolyneuropathy.org/t/ivig-dosing-and-frequency/366/8 "2013-05-29T20:22:59Z")
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.