DX confusion…
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August 21, 2011 at 5:52 pm
Hi everyone. Thanks for letting me join..definitely need some support right now…. I’m scheduled for my first IVIG next thursday and Fri. My Dr. said he only orders the tx for 2 consecutive days but he gives you same amount as if it were 5 consecutive days… He really doesn’t have a definite dx yet though which is frustrating but says he ‘thinks’ it’s cidp. My CSF protein was normal but my NCV and EMG showed slowed conduction. I failed strength test miserably, my quads are particularly weak and my reflexes are gone… my sed rate, CK and CPR have been moderately elevated. My eosinphil count has always been elevated between 5 and 9 but not over 10%, all other blood tests have been normal so I’m still wondering if I even have CIDP or if it could be something else. Dr. said I have nothing to lose by trying the IVIG…hmmm, I wonder… Have any of you had an ambiguous diagnosis or been dx with CIDP with normal CFS protein? I have not had a biopsy yet, dr. wants to try ivig first but [I] would think it should be the other way around…?? :confused:
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August 21, 2011 at 8:04 pm
I would question the giving of a 5 day course over 2 days. With that being said…that’s exactly what my daughter got when she was 4 years old.
I would worry about the potential side effects. Make sure you are very well hydrated & you are given pre-meds (Benadryl & either Tylenol or Motrin) and post meds (the same as pre-meds).
Make sure you have an experienced IVIG nurse & your rate is started slowly & then ramped up.
Kelly
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August 21, 2011 at 8:55 pm
[QUOTE=jc10]…hmmm, I wonder… Have any of you had an ambiguous diagnosis or been dx with CIDP with normal CFS protein?[/QUOTE]
Yes and/or Yes.
I too would initially consider going kicking and screaming to avoid a 5 day loading dose administered in two days.
However, this may be the kick in the pants an immune system needs. The results are what’s important.
Your body’s reaction will surely depend on the Dr’s recommended infusion rates.
Suggest you verify with your Dr that are not at risk for IgA deficiency. Here is why “[I]..It (IgA deficiency) may be inherited. It is found in approximately 1 in 700 individuals of European origin. It is less common in other people.
Note: People with complete IgA deficiency may develop anti-IgA antibodies if given blood products and IVIG. This may lead to allergies or life-threatening anaphylactic shock. These individuals can safely be given IgA-depleted IVIG…[/I]”
Good Luck
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August 21, 2011 at 11:48 pm
hmm…i have had regular blood transfusions twice now for anemia…would that mean i’m probably clear on the IGA deficiency? I’m really worried now…I think the Dr. is just being conservative due to costs. I go to Kaiser, it’s insurance and medical care all under the same roof and they have a reputation for not always giving the best of care… have been pleading for years to see a specialist for all my symptoms but they just thought it was all in my head…
This is what the RX says:
” Immune Globulin Human, IGG, (CARIMUNE NF NANOFILTERED) 6 gram IV Recon Soln 1 GRAM/KG IV each day x 2 days
I can’t even make out exactly how much I’ll be getting…is it 6 grams per day??that isn’t much is it??:confused:
[QUOTE=yuehan]Yes and/or Yes.
I too would initially consider going kicking and screaming to avoid a 5 day loading dose administered in two days.
However, this may be the kick in the pants an immune system needs. The results are what’s important.
Your body’s reaction will surely depend on the Dr’s recommended infusion rates.
Suggest you verify with your Dr that are not at risk for IgA deficiency. Here is why “[I]..It (IgA deficiency) may be inherited. It is found in approximately 1 in 700 individuals of European origin. It is less common in other people.
Note: People with complete IgA deficiency may develop anti-IgA antibodies if given blood products and IVIG. This may lead to allergies or life-threatening anaphylactic shock. These individuals can safely be given IgA-depleted IVIG…[/I]”
Good Luck[/QUOTE]
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August 22, 2011 at 10:57 pm
i received the 5 day loading dose of 2gm per kg in a 2 day period for a year and a half with no side effects. first every 12 then every 6 weeks. I was told that as long as you were fairly young, in good health (other than the cidp) and had healthy kidneys that this would be fine. I did pre med with tylenol and benedryl and drank tons of water. For me I chose this due to convenience—missed less work, etc. Lori
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September 1, 2011 at 1:51 am
i have got through so far without any major sides. today was my 3rd tx. they did stretch it out to 5 days but after reading your post, maybe that was foolish of me to push so hard for that–i’m getting 1/2 the dose you got 1grm/kilo…
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September 1, 2011 at 8:47 am
I got my initial loading dose over 2 days instead of 5 days too. My doctor said that since I was young and in good health that this should be fine. We did run it in very slowly and I drank so much water to be hydrated during and after for a few days. I still did get a mild head/neck ache after the second dose. It only lasted for a day and then went away. It was not a full-blown headache but it did cause me some pain. Doing better on the maintenance dose every 21 days…running it in very slow now, my infusion takes about 5 hours! But no more headache. Good luck!
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September 1, 2011 at 6:53 pm
yes thats correct, i got 2g/kg spread out over 2 days instead of 5—-65 gm per day. That was my loading dose. now I am following Dr. Dycks recommendation 1gm/kg weekly so only have to go one day. Lori
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September 1, 2011 at 7:31 pm
i’m not sure but i don’t think so. mine was originally going to be for 2 days but got them to stretch it over 5, the rx didn’t change
[QUOTE=GH-CIDP]jc10 and Lori222, the way I read it, it seems to me your dosage is the same, which is 1g/kg/day, or 2g/kg total for a two-day treatment. Is that correct?[/QUOTE]
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September 1, 2011 at 7:33 pm
my head hurts too bad to do any math…
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September 2, 2011 at 6:55 am
yes i agree—the ivig math is confusing….my error above though—I received 130 gms per day for 2 days on my loading dose 0f 2gm/kg. It is based on your wt—i weigh 144. So as long as you know what your rx states–your’s will just be divided 5 x instead of 2.
I recommend always checking out the lable on your ivig–just to be sure, especially if your getting it in an infusion area with lots of others.
Then to confuse us even more—-some are rxing ivig dosing on ideal weight rather than actual wt. because the solutoin is not fat soluable.
good luck with it—-i hope it works good for you. Lori -
September 3, 2011 at 4:05 pm
I don’t really want to give away my weight…but i got less than half of what you did and i don’t weigh less!….i wonder why??
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September 4, 2011 at 1:08 am
2.204 lb = 1 kg
Let use an example, say 132 lb:
132 lb divided by 2.204 = 60 kg (close enough)
Loading dose of 2 g of IVIg / kg body weight * 60 kg body weight = 120 g of IVIg total.
If you get this dose over two days, then you get 120/2 = 60 g each day.
If you get this does of five days, then you get 120/5 = 24 g each day.
So it is not hard: just put your weight in instead of 132 lbs and you can figure out what your loading dose should be.
For maintenance doses, put your specific dose in instead of 2 g of IVIg.
~MarkEns
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