doing ivig at home ! dosing question

    • Anonymous
      July 24, 2008 at 4:10 pm

      Hello everyone,

      I am set up to have ivig at home for the first time…always had it at the hospital. She said I am set up to have 20 grams over about four hours.
      Does that dose sound right ? Too lazy right now to look thru other threads…I know the answers are here. And, it’s just one day rather than a loading dose.
      I need to call the old neuro to see what I used to get. I know it’s based on weight, etc…Dawn, help me out here ?

      i’m excited to do it in my own house tho.

      well wishes everyone,

      Stacey

    • Anonymous
      July 24, 2008 at 4:36 pm

      Does the dr plan on giving you more than just the 20 grams? If you are only getting 20 grams & haven’t had a loading dose then it’s not really going to do much. Or is the dr just starting you off on 20 grams to see how you do then he/she plans on giving you more?

      Emily has always gotten 20 grams for each infusion. Her infusions lasts 2 hours and 45 minutes.

      The formula is 2g per kg over 4-5 days (unless you are Emily, LOL). I’ll try to help you figure it out…but I am mathematically challenged.

      Here’s a link to a website that converts lbs to kg’s:

      [url]http://www.healthyweightforum.org/eng/converter.asp[/url]

      And then I guess you would multiply the kg’s by 2 & that’s how many grams total a loading dose is.

      Then you divide that number by 4 or 5 (depending on how many days you want the infusions to go for) and that is how many grams you should get every day.

      Example if you weighed 150 lbs

      150 lbs = 68.18 kg’s

      68.8 X 2 = 137.6

      137.6 divided by 4 = 34.4 grams per day
      or 137.6 divided by 5 = 27.52 grams per day

      So, if my math is correct, you aren’t getting enough for even 1 day of a loading dose.

      (Dawn, LOOK….I think I finally figured out how to do it!)

      Hope that helps.
      Kelly

    • Dawn Kevies mom
      July 24, 2008 at 5:39 pm

      Stacey,
      Great news about the ivig, and at home too!! Well the 20 grams is not enough. 20grams total would be a loading dose for someone weighing a TOTAL of 22lbs. That is the size of a Thanksgiving Turkey!!! Not even Mary Kate and Ashley Olson are that tiny. Seriously, Stacey, you have the drop foot in both feet now if I remember correctly, I beleive your toes are numb, not to metion tiredness and weakness. You have to push for a loading dose, at least for a few moths to stabalize you. I think I recall you saying you did not observe much difference when you did ivig before, maybe you just have not ever gotton enough. It has been a long time that you have had these symptoms, so it will take loading doses for a while to get it under control!!

      Take your weight, say 150lbs, divide that by 2.2. So…
      150/2.2=68. So, you weigh 68kilo grams. Now you take that and multiply it by 2, 2 representing the 2 in a loading dose of 2g/kg. So… 68×2=136. A total loading dose for you is 136 grams (if you weigh 150lbs) Now you divide that over 4-5 days. So over 4 days you would get 34 grams, or over 5 days you would get 27.2 grams. They usually round up, so 35 or 30 per day. Kevin gets 25g over 6 hours and 40 minutes, but he is slow because of his bad reactions, you could probably go faster. Don’t forget to pre-med around the clock and a day post. I also recall you had an issue w/reactions last time, check to see what brand it was and make sure you are getting a different brand this time.

      I don’t want to make your great news of treatments diminished, I know this was a big step for you, but on the same token, 20g is not going to do anything for you, kind of like taking 1 days worht of antibiotics out of a 3 week course. i worry that if you see no results you will be frusterated and just give up thinking ivig does not work for you. You have to give it the proper chance before you can guage its benefits. The only way to truly do that is to at least start with loading doses. i hope you are not mad at me.
      Dawn Kevie’s mom

    • Anonymous
      July 24, 2008 at 8:25 pm

      Great News 🙂 I weight about 140-145 lbs and I got 25g a day for 5 days for a total of 125g.

      Sue

    • Anonymous
      July 24, 2008 at 9:27 pm

      thanks ladies for the info. Kelly, I’m impressed.;)

      Dawn, I am so not mad at you….I was hoping you’d read this and help me out. I thought when she said 20g that it wasnt near enough. I’d asked about the 5 day loading and this doc said she doesnt do that unless there is a significant problem. She also said I am young and going without treatment is a big mistake. It’s only taken me almost four months to set it up. What’s up with that ! I guess, I HAVE been sick with other stuff, in the hospital for about a week and then trying to find a dr and answers to what the H is going on with me. Anyway, I’m promising that I will call the infusion place and or the dr tomorrow to clear up the amt and frequency. i’m pretty sure it’s once a month for three mos….or could be once a week for three weeks…but almost 100 percent certain its once a mo.
      I do have the drop foot on the left and starting on the right…numb toes for sure and no movement in any of them unless my feet are flat on the floor, then I can move them. Strange. I have some numbing and tingling on my face at times…a new symptom that I havent mentioned. Hoping it’s just my imagination. My hands are weak, as are my arms AND legs…as I said, I cant walk 1/2 block without serious flopping and fear and great weakness. That part really scares me. I’m 38 and heading for a walker….or worse. I realize at the same time, many are worse off than me and I have to be grateful. It’s so easy to feel sorry for ourselves sometimes. I also know I cant give in and I refuse to let this take me there. I spend alot of my time worrying…unable to focus on the moment or look forward to the future. I want to change the mind set.I need to hold onto my husband more and laugh more and be happy again.
      Ok, getting away from my question now, I guess.
      Yeah, I weigh much more than a butterball turkey….22 lbs ? my boob maybe. ha. 🙂
      now we have humor.

      ok…trying to get a gsale put together for saturday. it’s very last minute but i have 8 tables set up and ready to be filled with kids’ stuff. Connor is not doing well with getting rid of ANY of his stuff…I even told him he could keep the money. He had big tears….what’s a mom to do. It has to go. I keep the good stuff…but there is so much. My neice is doing this with me…she has two girls that have way too much stuff, too.

      oh well….
      thanks for the help….I knew you’d come thru.
      I’ll update soon.

      tomorrow is Friday. yeah ~

      well wishes.
      Stacey

    • Anonymous
      July 25, 2008 at 8:32 am

      Stacey,
      The face numbness might not be your imagination, I thought that at first too but alas it got worse until my entire face fell into my lap. That being the case I’m not sure 20g will be enough to arrest the progress and get you better. It sounds like you are going downhill and thus you need aggressive treatment, not conservative. Is she planning to give you the 20g every day? every week? or 20g per day for five days or seven days every X weeks? what will your treatment frequency be? Arm yourself with those magic numbers when you call your doc about the quantity… thank goodness somebody on here can do math!

      Julie

    • Anonymous
      July 25, 2008 at 12:00 pm

      20 grams isn’t going to do ANYTHING for you. Emily gets 20 grams every 3 weeks & she’s 53 lbs. Think about that.

      You need a good loading dose…probably more than 1…probably like 3-4. Then you can start on a maintenance dose. This dr that you are seeing doesn’t know squat about treating CIDP. I’m sorry to say it, but it’s the truth.

      You cannot take someone who is in your condition & basically give them nothing & expect them to get better.

      Your CIDP is progressing! You need to get some heavy duty treatment going to STOP IT. There’s a good chance that if it’s starting to affect your face that it could go into your eyes. You do NOT want to deal with that too.

      I hope you can talk some sense into this dr.

      Sorry for being so forceful. But I feel so strongly about this. I know you haven’t had treatment for awhile now & this was a big step for you. I just hate for you to take this step then get discouraged because you aren’t seeing any results. I’m forceful because I care.

      Good luck,
      Kelly

      PS, we need to have a yard sale too. Emily is outright refusing to get rid of anything. She started crying at the mere suggestion of it. I feel for ya! Maybe try bribing Connor. Tell him you’ll take him somewhere really cool if he can do the yard sale & not cry about it. I’m bribing Emily with Build A Bear.