AnonymousMay 3, 2012 at 5:59 pm
Been receiving 0.4gms/kg of IVIG for CIDP for nearly 2 years on a 12-14 days schedule.
Now my neuro MD said, according to “some studies”, IVIG can be given at 1 gm/kg every 3 weeks.
I believe he is referring to the ICE study–the Gammunex IVIG company who held the study.
So i would be getting 54 gms once every 3 weeks, versus 25 gms every 12-14 days. Is this too large of a dose to infuse at one time?
Has anyone ever heard of this? What is your dosage for IVIG for those who are receiving IVIG for CIDP?
Thanks for anyone who can answer this.
May 3, 2012 at 6:48 pm
I have heard of people getting 50+ grams of IVIG in one sitting but it really depends on the person. If you are someone who does not respond well to IVIG or are sensitive to a higher infusion rate, a large dose at one time may not be for you.
I think it also depends on your schedule. You would need to find out how long the larger dose would take & then decide if doing that dose every 3 weeks fits into your schedule than the smaller dose every 2 weeks.
Of course the main thing is are you doing well on your current dose? You need to decide if it is worth it to you to change it.
For my daughter frequency was more important – you may be one of those people too. There are a lot of variables to consider here.
May 4, 2012 at 12:44 am
Have you ever had a large dose like that before? We get 35g every 2 weeks and it takes about 6 hours. Our infusion rate is the standard rate, not faster or slower. The only way I can see you getting the entire dose at one reasonable sitting would be to increase the rate. You may be OK with that, everyone reacts differently. You will just have to see what works best for you. I would try to see if you could start the infussion first thing in the morning in the event you cannot speed things up and require the full infussion time, it could be about a ten hour day. Are things working the way they are now? If so, why does he want to change? Keep us posted
May 4, 2012 at 1:27 am
I currently get 65 gms two days in a row every 6 weeks it takes me 31/2 to 4 hours to get 65 gms. I start infusing at 30cc’s and go up 30 every 15 minutes until i reach 240 then stay there until done. The advantage—if you can get by and do well with less frequency more ivig, is less needle sticks and freedom of not having to be at the hospital so often. hope it works for you 🙂 Lori
AnonymousMay 9, 2012 at 3:42 am
Thank you for all your input. I will be seeing my neuro MD the beginning of June. That’s when I can make my decision on whether to go 54 grams every 3 week. He says the decision is up to me. How am I suppose to know? He’s the doctor, not me!
It takes me 2 1/2 hours to infuse 25 grams, so I figure it’ll take me more than 5 hours to infuse 54 grams (the highest rate is 100 ml/hr). After my IVIG infusion, I feel my legs get “heavy” and “weak”. Does anyone feel this? One of the side effects of IVIG is “asthenia” according to the IVIG prescribing information. My CIDP fluctuates. There are some days where I am feeling good with energy, and there are some days where I am so tired. Does this mean I need more IVIG?? This is a crazy disease, so unpredictable.
May 10, 2012 at 2:15 am
I get 48g every 2 weeks (I weigh 130lbs).. unfortunately it takes me around 9 or 10 hours..at an infusion center- long day! If I go above 80 I get aspectic meningitis.. in fact even at 80 this last time I got a mild case (the headache, fever, chills spine pain – ouch)! I was getting weak after the infusions.. I even felt like my muscles were all vibrating when I was getting it every 3 weeks. I was noticing it “wearing off” or having “relapses”/extreme (lidocaine like) numbness, tingling and weakness hitting various parts of my body around 10-14 days after the infusions.. I have had 2 now that were closer together (one 12 days the other 14).. and notice a DRAMATIC improvement in everything… I also have good and bad days.. though this past month with having the ivig closer together have been pretty consistent.. though if I overdo it my muscles are S O R E! Good luck, hope that does the trick for you!
AnonymousMay 10, 2012 at 10:48 am
When I tried IVIG, it was very large doses. First we tried 30g 2x a week, then 30g 3x a week (every third week off). That’s much higher than everyone else in this post! But my Dr. really wanted to try high doses to see if I responded (which I didn’t).
I usually started at 50 ml/hr, and if I was fine after 15 minutes I’d go up to 100 ml/hr. My Dr. really does not like patients going over 100 ml/hr, because negative infusion reactions go up as the speed goes up.
What I found helped a lot with headache prevention was drinking a lot of water before, after, and during the infusion. You end up having to go to the bathroom quite a bit due to the fluids, but it’s worth it to prevent the headache. And also, if your Dr. hasn’t prescribed any premeds, you should talk to them about taking Aspirin and Benadryl (or Allegra) prior to your infusion.
May 28, 2012 at 11:00 pm
My husband get 1gms/km (I think). Started out every week. Dropped to every other, then every three weeks. Now down to once per month. He is always pretreated to help prevent any reaction.
He is doing fantastic! It has been about 14 months since he started on the high dosage which was prescribed by a neurologist at University of Washington medical.
AnonymousMay 31, 2012 at 12:03 am
I am going to a Center of Excellence at UCLA next month to see Dr. Micheal Graves. I am hoping they will help me with dosing of IVIG. My dosage has been 400mg/kg=25 gms every 12-14 days. My current MD wants to change it to 1gm/kg=54 grams every 3 weeks. I calculated I will be getting 95 grams more if I go every 3 week schedule vs the every 14 day schedule.
My fingers on right hand are somewhat numb and the fingers itself hurt since I’ve changed to 12-14 day schedule. I am right handed too. Maybe they can give me some insight or other therapies for CIDP or maybe I can’t be helped at all.
I felt an electric shock in my left eye that other day and that scared me! I have shocks in different parts of the body for time to time. But the one in my eye was scary. Underneath my right foot is numb; it feels like something is underneath it–my doctor says it’s numbness.
May 31, 2012 at 1:40 am
exosurf—do not settle for thinking “maybe you can’t be helped at all” if properly diagnosed and your cidp is stemming from your immune system—keep trying to find what works for you. I am in that same situation right now too. I am coming close to my 3 year mark of being diagnosed and starting ivig. I have tried prednisone–didnt work, tried plasma exchange–didnt work. I feel better for a short while after receiving 130 gms of ivig (loading dose–i get 65gms per day for 2 days every 6 weeks) but it is not holding me.
tomorrow i will receive my first dose of rituxin—kind of nervous but excited at the same time. If your second opinion comes back as cidp too, then definitely keep searching until you find somethng that works. If the ivig doesnt seem to be working well ask your dr for alternatives. I wish i had asked earlier and not waited so long hoping for the ivig to work. good luck at your appointment–i hope you get some answers. Lori
AnonymousJune 1, 2012 at 12:28 pm
I have received two doses of 200 mg. in two days, and will receive three doses more in the coming three months. I was told it depends on your bodyweight how much you can take. The bottles contained 50 mg. in 0,4 liter of fluid, so receiving four of these bottles (more than a liter and half) I had to visit the bathroom quite often ;-).
June 28, 2012 at 10:11 pm
There is a new theory that the dose should be according to what your ideal body weight is…… that is a whole other conversation. But if you go by the regular protocol of 1g/kg for a maint dose, you would be 86 grams. Your weight 190/2.2=86.36, so 86 grams. A load is your weight in kg (86 x 2=172grams) Not everyone responds to the typical protocol, some need more, some less. It just takes a while to figure out what your disease process requires. Some people could get the 86g in a one day infussion, others may need two days. We get our maint dose broken up one day every two weeks.
June 29, 2012 at 2:18 pm
I receive 0.4 g/kg which for me is 20 grams which takes me 4 hours as I cannot tolerate a rate above 60 cc/ hour – currently I am receiving every 10 days or so – when I went to Mayo clinic I discussed this with Dr Dyck – it was his opinion that lower more frequent dosing was more beneficial than larger less frequent dosing and also he feels most people are under treated with IVIG – I am really hoping the sq gamma globulin studies pan out as I think this would solve a lot of the logistical issues that are a barrier to proper dosing and frequency.
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