I think more grams of ivig is better than other medicines
AnonymousMarch 4, 2007 at 11:14 am
I spoke with a guy named Tom at Octapharma. We have been getting Octagam for our 2 year old. I guess he’s gotten it about 5-6 times already. The hospital purchases different brands, I guess what’s available to them.
Anyway, we talked about the side effects of more grams of ivig. I know the present recommendation is 2 grams per kg of weight but I would rather up that than put the baby on the drugs we have been talking about with the neurologist.
We’ve been talking about cyclophosphamide (cytoxan) cellcept, cyclosporin, etc.
Does anyone have anything to add to this??
The guy from Octapharma and I spoke about renal failure and blood clots. I have done some research and will post another question regarding this. It needs it’s own thread.
Thanks for anything you can add to the situation.
AnonymousMarch 4, 2007 at 12:45 pm
I don’t think you can up the grams of IVIG for his body weight, it could do more harm then good. You don’t have to put him on the other drugs if you don’t want to. If you overload the body with IVIG it can cause renal problems,
because of the amount of overload of fluids, the body may not be able to expel and cause tissue damage along with renal failure. To much of any fluid is not good for the body and organs.
Renal failure from IVIG is very possible if you are a diabetic and have the sucrose based IVIG, so if Dell has any issues such as diabetes please get an IVIG that is not sucrose based.
AnonymousMarch 4, 2007 at 11:38 pm
I guess I didn’t quite understand your question, has the current dosage of IVIG quit working? Because Brandy is right, IVIG is based on weight, giving more will not make things better. Is that why that want to try other immunosupressants? If possible I would try to avoid using any of these on one so young, there will be frequent blood tests & worrying about possible liver damage. Also, try to stay away from steroids on one so young. But again, I don’t know is current condition or how the IVIG is working…
AnonymousMarch 5, 2007 at 5:19 pm
If the recommended dosage of ivig is 2 grams per kg of weight, Dell could receive almost 20 grams of ivig. Now, the big question is, how often can you get the 20 grams. I don’t think anyone has that answer, we’re all feeling around in the dark about this stuff.
Pam, if you remember when we talked last, Dell has no consistancy to his treatments (outcome). He did fine for 6 months when he was first dx. and was on the ivig, then slowly, it seemed like it did not work as well. Some treatments we saw no improvement. We also experimented with different brands and could not come to any conclusion that it has anything to do with brands.
We are trying the solumedrol for another month or so. I don’t think he’s getting large doses, 100 mg one week and 200 mg the next, with the ivig.
I don’t want to give Dell more ivig than his body can handle but something has got to change because things are not working.
We did see a little light at the end of the tunnel. Weekend before last, he got 25 grams over 3 days. First infusion was 15 grams and it was on Friday. We saw an improvement, the following Wednesday. He has a fever now, so he’s acting a little weak now.
Thanks for writing.
AnonymousMarch 5, 2007 at 5:47 pm
There is no answer to how often a person should get IVIG. It’s based on the individual. No one knows how much is too much as far as frequency. They do know that one dose should not exceed the 2 kgs per gram.
Emily is almost 50 lbs now (thanks to the Prednisone) and gets 20 grams of IVIG. She was about 40 lbs when she was first dx’d and received 20 grams then too.
The key to keeping Dell from getting worse is to figure out how often he needs the IVIG. Keep a journal of what he is doing from day to day (example: walking along the furniture). When you start to notice that he isn’t able to do that as well then you should IMMEDIATELY call the dr and get a dose of IVIG. When Emily is relapsing it takes 3 doses to get her back to “normal” – 1 doesn’t do the trick.
Then you need to try to give him a dose of IVIG 3 days before the number of days it took for him to relapse. Does that makes sense? I’ll use Emily as an example. She is relapsing at day 12. So we give her IVIG on days 7-10 (depending on when the nurse can come).
I asked our nurse today about the blood clot concerns. She said that if there was a problem developing it would show up in the blood work in the hematocrit. Then he would probably be given Coumadin as a blood thinner.
That’s what I think you should do anyways.
I hope that helps.
AnonymousMarch 5, 2007 at 7:50 pm
I don’t know Dell’s situation very well, but from what I gather in the post is his CIDP seems to act sort of like mine. When I was first dx I would recieve IVIG, get better, then start to relapse. I recieved IVIG 5x’s a week every couple of weeks for about 6 months until it no longer seemed to work. After trying about every treatment possible the Cytoxan did put me into remission for almost 2 years, when absolutely nothing else worked. Though like Pam mentioned, I would be hesitant to use it in someone so young.
I have also been on Cyclosporine and it caused me to develop pancreatitis, I personally don’t reccomend it. I now take Immuran which seems to settle much better and works the same as the Cyclosporine.
As far as the IVIG goes I really don’t understand how often Dell recieves it. For the past 6 months I have been recieving smaller doses of IVIG 1x every week, and it is working wonderfully this way.
I hope I have been any help and I pray that Dell feels better soon,
AnonymousMarch 6, 2007 at 10:26 am
I just spoke with Lori, Dell’s Mom and we have a question. She can’t get to the computer right now. When you get to that ,say ,7-10 days that Emily needs IVIG so she doesn’t relapse at day 12 what is the grams/kg of body weight of IVIG that she gets? Is it 2g/kg divided evenly over the 3 days, 3 days of equal doses?
AnonymousMarch 6, 2007 at 11:15 am
Sorry I should have been more clear.
Emily gets 20 grams of Gammaguard 10 % solution. She is 50 lbs. I can’t find the nursing info with the exact kg’s but I believe it is 2kgs per gram but I’m NOT positive on that – could be 1 kg per gram.
She gets 1 infusion. It’s either 7,8,9, or 10 days after her last one. We prefer her to get an IVIG infusion 1 time a week.
I was really tired when I posted last night. Maybe I shouldn’t type & yawn at the same time, LOL.
I hope that clears it up. Tell Lori that she can call me if she has any questions. I’ll be home today from about 12:30pm – 2:15pm then after 7pm. Emily has drama club today & then we have some errands to run.
AnonymousMarch 6, 2007 at 10:18 pm
Your daughter Emily gets 1 g IVIg per 1 kg body weight (well, close enough, she weighs 22.7 kg).
Lori and Cindy,
I don’t really know, but I would guess that it is probably no more than 1 g/kg every week. Here is why. One, part of the reason the typical outpatient protocol is 0.4 g/kg over 5 days is to keep the load on the kidneys down. [There are protocols with effectively continuous flows of IVIg, but they are in-patient.] Two, based on some experience, it looks like an acceptable average is 0.1 or so g/kg/day. Kelly’s Emily’s dose works out to 0.11 g/kg/day. My dose, when I first tried IVIg, appeared that it was going to average out at about 0.1 g/kg/day. My neurologist thought this was acceptable, if undesirable. If I had gotten this much, I was going to need to drink lots of water, to keep the kidneys from overload.
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