AnonymousJanuary 22, 2010 at 3:11 am
Actually, it doesn’t sound like enough, but it would depend on how often you get it, what brand you’re getting, if you’re newly on or receiving maintenance, etc. The standard maintenance dose is 2grams per kilo of weight. I weigh 60 kilos (about 130 pounds), and so receive 120grams (at 10g per bottle, that’s 12 bottles) over two days every four weeks.
January 22, 2010 at 8:20 am
You take your weight 160/2.2=72. That is your weight in kg. now you x that by 2 to get 2g/kg. So a load for you would be 144 grams. You would/that over 5 days which is 28.8. They round up which would be 29. The bottles are usually in increments of five. Some do have ones, but it would just be easier and better for you to get the extra gram. If you do well in the hospital the first time, maybe even a second time next month, they may do it over 4 days when you start to do it at home or in an infussion center, whichever your insurance allows for. Make sure they start slow, and ramp up slow. Call the pharm. at the hospital prrior if you like to ask what the standard rate change would be for your weight. It is a standard formula. I can tell you for Kevies weight, #148, it takes him 4 hours for 30 grams. As time goes by, depending on how you react to ivig, you can tweak the schedule. For instance, it worked better reaction wise for us to split it up over 2 weeks for 2 days instead of 4 days in a row monthly. Everyone is different, you wil have to see what your doc wants and what works for you.
January 22, 2010 at 8:24 am
Be sure to inquire if it will be liquid, or s/d (powder) Kevin and others seem to react poorly reaction wise from s/d. Also make sure you ask the doc to stick to one brand and not jump around. Only switch if you feel you are terribly sick repeatedly and a brand change is warranted. Save the tags on the bottles or the boxes, or copy them down on a set peice of paper to keep control of lot numbers for recall purposes, reactions and even to check the exp. dates.
AnonymousJanuary 22, 2010 at 10:08 am
Does the dosage change if the IVIg comes from a re-hydrated powder or a liquid? I have been getting 30 grams of re-hydrated IVIg every 4 weeks. I’m 6′ 6” or 5′ 18″ [depending on which way you calculate it] and 285 lb ~130 Kgm. The IVIg treatments really don’t seem to be stopping the slow decline, so I’m curious if the treatment is too consecrative because of the cost. :rolleyes: I was told they didn’t want to increase the IVIg because they were concerned about possible damage to my kidneys. As far as I know my kidneys are fine.
January 22, 2010 at 10:22 am
I am not a phar or doc, however, when Kevie had the powder, it was still the same amount of grams when mixed w/the saline. Are they weighing the powder in grams? I don’t know. But….at your weight, if the amounts are the same powder to liquid, you might as well not even bother doing the thirty grams. You should be getting 260 grams monthly. 30 is like putiing maybe 3 drops of liquid plumber in a totally clogged drain. Your clinical description of your status substantiates that 30 g IS NOT working for you. I think I remember you go to the VA, so I am sure money is the reason. Do you take anything else, steroids, imuron, pp? I think I remember you saying you have the progressive type, well in my uneducated mom opinion, if you tried more ivig you might find that in fact you don’t have the progressive variant, you just might not be getting enough ivig. Keep in mind, you typically are on the site in a responding to others mode, it has been a long time since I remember you talking about your past treatments and conditions, so I am only basing my response on what I remember you posting over the years.
DAwn Keviwes mom
January 22, 2010 at 10:39 am
I forgot to adress the kidneys. The kidneys would be a huge concern if you had diabetes AND were getting ivig with sugar in it (preparation/cleansing agents) Gammaguar and gamunex do not use maltose,sucrose. I am not sure if the powder increases the risk to kidneys. I am surprised you still bet poder, it is supposed to be reserved for special needs for some reason not to do with cidp. I think people who are extremely immune compromised.???
AnonymousJanuary 22, 2010 at 10:49 am
Many factors determine your dosage, mine for maintenance purposes is 50 grams/500ml daily for 2 days every 8 weeks. I’m 6’3″ 265 so I’d be receiving less than your typical dosage. My dosage has remained the same for years, only the frequency has changed. You and your Doctor will determine which formula or brand works best for you. Good Luck
AnonymousJanuary 22, 2010 at 11:40 pm
From what I can tell, the most commonly recommended maintenance dose is around 0.4 g IVIg/kg body weight once every 4 weeks. If you were getting this dose, you would get 52 g, rather than 30 g. If you needed a full loading every month, then you would get the 260 g Dawn mentioned.
Because you seem to be having a slow worsening of symptoms, maybe you and your neurologist should consider a loading dose to get you more fully recovered and then a larger maintenance dose. Your doctors may have reason to be concerned about your kidneys, though. Ask them to spell out exactly what the concern is. The protein load alone, regardless of sugar content, can hurt the kidneys (ask Julie), so if there is a problem, the risk might be a bit too high with a larger dose.
Godspeed in finding improvement,
AnonymousJanuary 23, 2010 at 2:09 pm
I agree. In my opinion you are not receiving the proper amonut of IVIg. These are my recommendations:
1) Talk with your doctor and get the amount increased to 52 grams every 4 weeks. This is the first step.
2) If no improvements with the 52g every 4 weeks, then go to every 3 weeks, with the 52g.
3) If no improvements after the 3 weeks, then go to every 2 weeks, with the same amount, 52g.
4) If no improvement after the 2 week regimen, then go to every week with the 52g.
Give each step about 2-3 weeks to show signs of improvement. However, we must all remember not everyone responds the same to all the different therapy treatments available.
Regards to all.
AnonymousFebruary 12, 2010 at 5:29 am
[QUOTE=MarkEns]. The protein load alone, regardless of sugar content, can hurt the kidneys (ask Julie), so if there is a problem, the risk might be a bit too high with a larger dose. [/QUOTE]
My kidneys hurt frequently, apparently they don’t process this thick stuff all that well. My recent blood tests showed my ESR (sed. rate) was 76 mm/hr – the range is 4-25. No wonder my blood looks like jello!!! 😮 This is another reason we are switching to subcutaneous Ig…
AnonymousFebruary 12, 2010 at 6:44 pm
If you are getting 30g of IVIG per day for 5 days, that would be the standard loading dose for somebody of your weight.
You weigh 160 lbs. or ~73kg. The standard loading dose is 2g for every kg of body weight; for you, 146g spread over 5 days at 30g per day.
I received this loading dose every 4 weeks over 4 months until my condition stabilized, at which point my dosage was reduced to 1g/kg of my weight, every 4 weeks. Some doctors may have kept me on the loading dose for only the first course of IVIG; others may have adjusted the dosage differently. There are many articles on the internet about IVIG for CIDP, but most of them are only available as abstracts from medical journals or from pubmed. In the archives of this site, you can read “Established Therapy for CIDP” from 1998,
For general info in IVIG there is a magazine called IGLiving, also available on the web at [url]http://www.igliving.com/index.html[/url]
Good luck with your treatments. I hope it works for you.
AnonymousFebruary 12, 2010 at 11:09 pm
I kind of like GaryD’s math, as that is one aspect I’m not good at? But the cautious input of IG is essential to determining a] IF you can tolerate it w/o some very unpleasant side effects; b] assess if this dose works; and lastly The costs are dear – HE has to justify it all to the insurance co and I understand that paperwork is lengthy…
You should keep short notes at hand to record things like: IF and when during an infusion you mite seem to get a headache?; Do you really HYDRATE well before infusions? I dose myself w/a half 16oz bottle of gatorade each day and drink water till I slosh almost… then? During infusions…guess what? Gotta GO! Awkward but necessary aspects. LASTLY, record! Minute by minute IF you feel anything GOOD from the infusions! For me? Aside from the pre-med semi-slumber? My ankles relax! Totally. Each month about an hour into the infusion? That happens and it is a joy. The muscles there which have been working overtime [and those nerves?] RELAX. Drugs don’t do this? Only IG! Go figure.
I agree with others, but if you hydrate REALLY well, your kidneys shouldn’t be too much of a problem for a while? But you’ll have to be sloshing for at least the 10-15 prime days after infusions when they are doing their work and essentially killing off the mutant immune cells…they gotta go somewhere and out.
Just keep short and sweet your notes to your doc about ‘good or bad’ things of the infusions. YOU MUST BE HONEST! But, even admit fears about not getting it…if you suspect your doc is waffeling. In my case? I was in a hospital who substituted the PRESCRIBED brand with four other brands over a 6 month period…I was ready to give up until I found another venue. WheW!
Keep faith and hope that’s what we got to go on. That and a lot of community knowledge and experiences!
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AnonymousOctober 31, 2006 at 9:32 am
Hi all. I am looking for information on IVIG maintanence. How is the dosage and time figured out? Every 28 days seems to be the average. I know the initial dosage was determined by weight and given over 5 days. How do they determine how much should be given once every 28 days?
I know to pretreat with tylenol and benadryl, but is there anything else I should know? My doctor discussed starting IVIG maintanence and I would like all the information I can get prior to starting. I appreciate your input.
AnonymousOctober 31, 2006 at 12:12 pm
Maintenance doses are based on what you each person needs individually. Some people can go 4-6 weeks between them & some a shorter period of time. It’s just what works for you. And you may not get it right to begin with, it’s something that takes time to figure out.
Along with taking Tylenol & Benadryl you should make sure that you are well hydrated before, during & after your infusion. I’m talking drink water until you want to barf kind of hydrated. If you get dehydrated while getting an infusion then you are more likely to have the flu like side effects.
I also give my daughter a Gas X pill midway through her treatment because she tends to get bloated from it & the Gas X relieves that problem. Talk to your dr about that first though.
AnonymousOctober 31, 2006 at 3:30 pm
I’m still in the wait-and-see mode — sounds like you may be, too. I’ve had two treatments, second was 10 weeks after the first. I’m now at almost 4 weeks since the second treatment and everything is fine.
Another to add to your stock-o-pills is a baby aspirin every morning, at least this is what I was asked to do.
AnonymousNovember 1, 2006 at 2:19 pm
I get IVIG monthly for maintenance, usually it’s every 28 days or less. I got 30 grams monthly based on my weight and got that for the first 2 years post my GBS onset. I now recieve 60 grams monthly which is double the usual because I have some other issues going on and that’s what I require now. But usally it’s monthly and based on your weight. Hope that helps Brenda. Email me if you have any other questions.
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