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April 12, 2011 at 11:42 am #9651
I saw my neurologist on Friday for testing and evaluation. Back in October of last year my EMG/NCV testing and physical examination showed improved nerve function, but my testing last Friday showed no further improvement.
I was already receiving 60g of Gamunex C every two weeks. My neurologist increased my dose to 80g every two weeks, thinking the higher dosage might bring about more improvement.
Don’t get me wrong, I am a big guy (265 pounds), but 160g of Gamunex C every month seems like a mammoth dose. In fact, I have never heard of anyone here receiving such a large amount of IVIG. Has anyone else?April 12, 2011 at 1:24 pm #99097
there is a formula to figure out how much IVIG you should get.
Sorry I do not know it. Someone will know it.
I get 90 grams per month.
Hopefully by giving you such a dose it helps.
RhondaApril 12, 2011 at 5:39 pm #99100
I think it is 1 Gram for every kilo of weight. So Goodney you would weigh about 120 kilograms –thus 120 Grams would be a standard dosage. Hubby is a similar weight and was getting 120 G. every three weeks. He tried weaning down slowly and got down to 80 G. and then deteriorated again. He is back up to 100 G. every 3 weeks and is just marginally maintaining with that dose.
LaurelApril 12, 2011 at 6:13 pm #99101
Hmmm, the numbers I’m familiar with look like this-
“[I]Patients were treated with an initial loading dose of 2 g/kg[/I]”
“[I]patients were randomized to receive IVIg (0.4 g/kg once a week for 3 weeks[/I]
these numbers are from-
As for me, the UCSD trial dose I received was at the .4g/kg 3 days in a row every three weeks.
So, Goodney, for me that was 32g + 32g + 32g or 96g over three weeks.
Also, only for me and, only for now, If I don’t get IVIG every week I decline.April 12, 2011 at 6:57 pm #99104
Makes more sense your way Yuehan. I think it follows along with that video tutorial that Kelly posted a few months ago.
LaurelApril 18, 2011 at 9:29 am #99201
i wonder What is the max dose one can have in one day? Does anybody know?
MarcioApril 19, 2011 at 11:20 am #99219
In a different post someone stated they weighed 158lbs and further that, “I used to get 75 grams every Saturday and another 75 grams on Sunday and have 2 weeks in between. ”
Therefore, taking a one day dose of 75g and weighing 158lbs, do the math:
.4g/kg is a normal dose. substitute an unknown amount, let it be x
therefore, (x)g x #kg = 75
#kg for 158lbs = 71.62
substituting, (x)g x 71.62 = 75
yields, (x)g = 75/71.62
finally, (x)g = 1.04
Or, 2.6 times the ‘standard’ dose of .4g/kg!
Is it a record? 150g over two days every two weeks. Well, there are 4 1/3 weeks in a month. Let’s say it was 75g per week, it’s easier to do the math. So, 75 x 4.33 = 324.75g per month.
And, for now, so it is- a new record dose of IVIG for maintenance treatment.April 23, 2011 at 1:29 pm #99277
The person in question is, in effect getting a “loading” dose of 2 g/kg every two weeks. Strictly speaking, it should be 143.4 g total, but there is round-off error due to how IVIg is supplied. While more the frequency is higher than normal, it is not unheard of: I think Kelly’s daughter used to have a protocol something like this.
The 0.4 g/kg dose comes from the spreading a 2 g/kg dose over 5 days, done in order to minimize the side effects of the infusion.
I think the Peripheral Nerve Society guidelines suggest a “loading” dose of 2 g/kg and maintenance doses of 1 g/kg every 3 weeks as the starting point for treatment.
~MarkEnsApril 24, 2011 at 12:47 pm #99299
[QUOTE=MarkEns]…I think the Peripheral Nerve Society guidelines suggest a “loading” dose of 2 g/kg and maintenance doses of 1 g/kg every 3 weeks as the starting point for treatment.~MarkEns[/QUOTE]
Thank you. Indeed, it is not only the PNS guidelines, it is straight from
GAMUNEX® PRODUCT MONOGRAPH by Talecris Biotherapeutics, Inc.
“[I]Chronic Inflammatory Demyelinating Polyneuropathy (CIDP): GAMUNEX® may be initially administered as a total loading dose of 2 g/kg (20 mL/kg) given in divided doses over two to four consecutive days. GAMUNEX® may be administered as a maintenance infusion of 1 g/kg administered over 1 day (10 mL/kg) or divided into two doses of 0.5 g/kg (5 mL/kg) given on two consecutive days, every 3 weeks.[/I]”
the whole thing:
Note, if you cannot open a pdf document you may download the free reader from Adobe.
In the document they also talk about maximum infusion rate.
“[I]For intravenous use only. It is recommended that intravenously administered GAMUNEX® should initially be infused at a rate of 0.01 to 0.02 mL/kg per minute (1 to 2 mg/kg per minute) for the first 30 minutes. If well-tolerated, the rate may be gradually increased to a maximum of 0.14 mL/kg per minute (14 mg/kg per minute).[/I]”
Can you digest that? Say I weigh 80kg. My goodness, their suggested maximum would be 14mg/kg*80kg per [COLOR=”Red”]minute[/COLOR]=
1120mg per minute! I’d have a stroke or rupture something.April 24, 2011 at 4:09 pm #99300
Your algebra totally confuses me. I do NOT have a math brain!
Emily (between 35 & 45 lbs) would get 20 grams of IVIG each day for 5 days as a loading dose.
She would then get, as a maintenance, 20 grams of IVIG 2 days in a row for 3 weeks. Then she would get 20 grams of IVIG 3 days in a row for 2 weeks. Then back at the 2 days for 3 weeks & so on.
So, in 1 week she would get 100 grams of IVIG as her load & then her maintenance was 40-60 grams per week.
This went on for 3 months. She was then able to go 9 days relapse free & she was put on a weekly IVIG schedule of 20 grams per infusion.
I pulled out the calendar from 2006 whichshows her IVIG schedule.
Her 1st loading dose after being dx’d with CIDP she received 20 grams of IVIG daily from 4/6-4/10 (in the hospital). Then she received 20 grams of IVIG on 4/12, 4/14, 4/15, 4/18, 4/20, 4/22, 4/24, 4/26, 5/1 & 5/3.
So that equals out to be 300 grams in 4 1/3 weeks. (20g x 15 days)
At that point her eye (which was paralyzed looking in toward her nose) was repaired & had full movement.
WOW…that made my head spin, LOL.
I should note she’s now getting 20 grams every 4 weeks & weighs around 80lbs.
KellyApril 24, 2011 at 9:36 pm #99302
[COLOR=black]I suppose it would be possible to get 14 mg/kg per minute, but it would certainly give [I][FONT=’Verdana’,’sans-serif’]me[/FONT][/I] a headache. I think the upper limit probably relates to the viscosity increase and its effect on overall circulation, but it is only a guess. I think the key phrase is “well-tolerated”. My infusion clinic starts everybody at no more than 50 ml/min for the first 15 minutes and then increases the rate 25 to 50 ml/hour every 15 minutes until they reach the rate previous experience suggests has minimal side effects. Some people of course have bad side effects anyway, so then it is a (unfortunate) balance between severity of the side effects and the need to complete the infusion within 8 hours. For example, one fellow patient can only tolerate 90 ml/hour and that is only with several other medicines to keep the side effects marginally tolerable.[/COLOR]
[COLOR=black]Emily’s treatment was even more unusual than I remembered. It was clearly necessary, though, as evidenced by the clinical results. That she only needs 20 g every 4 weeks is great; that is only about half a gram of IVIg per kilogram of weight.[/COLOR]
[COLOR=black]Happy Easter everyone,[/COLOR]
[FONT=Times New Roman][SIZE=3] [/SIZE][/FONT]April 24, 2011 at 11:52 pm #99303
MarkEns – We were so fortunate to find the neuro we did. He doesn’t know much about CIDP but he knew enough to listen to me & when I said Emily needed IVIG, he would write the rx for it. He is the one who came up with the schedule I mentioned in my last post after she was dx’d with CIDP. It’s because of that schedule Emily’s eye was able to be repaired.
The fact that 5 years into CIDP she is doing SO well is amazing to me. Where we started this journey was certainly scary. We were told she may never be able to ride a bike or keep up with her friends. And now she’s just a normal little girl & has more energy that some of her friends. It’s really a blessing!
This is why I really push for high doses of IVIG. I believe it made all the difference in the world for Emily’s recovery.
As far as infusion rates go, Emily’s nurse starts her out VERY slowly (at 10ml, I believe) and NEVER goes over 100 ml. Since we switched home care companies & they changed the rate, Emily does not get the horrible stomach aches any more. I now believe the years of terrible stomach pain (screaming, sweating, shaking, etc) was a reaction to the infusion rate. BTW, her infusion of 20 grams still takes 2 hours & 45 minutes, which was the same time it took w/the previous company.
I hope everyone enjoyed Easter. I know I had a great day!
KellyApril 25, 2011 at 7:57 pm #99312
I was on IVIG 25 gms every 10 days for the last year, and was changed to 25 gms every 2 weeks for the month of April. I received a treatment on April 14th and am due for another one April 28th. Today is 4/25 and I don’t feel as good as I felt when I was on every 10 days. My legs feel “funny”; not completely strong as before; have little aches and pains in my body; still have the electric shocks several times a day. Sometimes I can’t explain my symptoms to my doctor. I am not completely weak. But I am wondering, am I starting my slow decline? I don’t want to wait until I am really “way down” before I tell my doctor the every 2 weeks isn’t working. I feel like a guinea pig–experimenting w/ the IVIG dosage and frequency. I’ve been on IVIG since Nov. 2009.April 26, 2011 at 3:04 pm #99333
Exosurf – It may seem strange to some people but when we increased the time between treatments I always wanted to do it VERY slowly. When Emily went from treatments every 10 days to every 14, I had the nurse come every 12 days for 3 months…just to be sure Emily could handle it.
Maybe that would work for you too?
KellyApril 26, 2011 at 4:59 pm #99336
exo, wow, How to taper IVIG? That is the question of the millennium.
I just wanna say that you are your own best judge and advocate. If you feel weaker now, don’t wait. Call your doctor.
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