Finally a few answers!!!
January 5, 2012 at 9:52 pm
Hello everyone! I just want to thank you all so much for being SO helpful and supportive since I’ve been on this forum! I am almost 3 weeks out from my IVIG.. i wasn’t sure if it helped, I thought it did, but thought maybe it’s just placebo effect.. until the past 2 days.. I have started feeling bad/more weak etc again, and realized yup it defintely helped! 🙂
I had autonomic testing today and it was positive- my heart rate went up to the 150’s and apparently some other things – but they are still “crunching” the numbers.. they said whatever this is has affected my autonomic system
I also got results from my skin/nerve punch biopsy and they were abnormal- shows I had involvement in all biopsies- the most proximal they did was the thigh and it was also abnormal. I think the dr finally realized I wasn’t just “tired and stressed” that something was really going on, so it was a better appointment overall this time, and to FINALLY have some sort of answers!
They ended up calling it “inflammatory and toxic neuropathy” ?? with it being a CIDP varient top on their list. So I will be getting IVIG every 3 weeks, with my follow up in 6 weeks, if need be they will add daily meds on, but trying not to since apparently they have more side effects.. .
So we were thankful that we at least have treatment plan in place, and some answers- at least i’m not totally crazy!! 🙂 I hope I get better with these IVIG treatments- sounds like I will be getting 30mg or g.. is that a “normal” dose compared to what yall get? THanks again!!! I really appreciate you all!
January 6, 2012 at 7:59 am
I am so glad you are moving forward to regain your health and function again! Your experience is so similar to mine! In terms of IVIG I receive 20 grams every 10 days but dose is usually based on weight with 0.4 grams/kilogram of body weight being fairly standard ( to convert weight from lbs to kg just divide weight in lbs by 2.2) – the frequency is very variable and this is where the art of treatment comes in. My local neurologist as well as the mayo clinic favored more frequent treatment to promote healing and when feeling as good as possible to try to back off then but must be balanced with ability to tolerate treatment schedule. My advice is try 3 week schedule but would push for more frequent treatment if you are not consistently improving. You are young and now is the best time to be aggressive to prevent permanent damage. Just remember to keep rate low and slow during infusion and pre meds may help. When is your next treatment?
AnonymousJanuary 6, 2012 at 1:55 pm
FINALLY! ANSWERS! YAY!
I’m glad the IVIG has worked for you. I’m not sure about toxic neuropathy…never heard of it. I think some Googling will be in order when I get a few minutes.
As far as your IVIG dosing…Emily is now 95 lbs & gets 20 grams every 5 weeks. I think she’s supposed to get around 40 grams for a load. It’s supposed to be 2 grams per kg for a loading dose.
The formula to figure out how much IVIG you should get is:
Your body weight times 2.2
Then divide that number by 5 & it should be a maintenance dose
(keep in mind I’m REALLY bad at remembering it so you should probably do a forum search as it’s been posted a few times & I am probably off on something)
But for Emily it would go:
95 x 2.2= 209
41.8 would be her loading dose
It sounds to me like you may not be getting enough IVIG. I know Dawn’s son Kevin gets around 70 grams a month (35 grams every 2 weeks).
You may want to discuss your dosing with your dr. Also, since you have started to notice a decline you might want to request another loading dose before starting your maintenance schedule. Since you had such a bad reaction, I would suggest, instead of doing a loading dose in 5 days that you space it out over 10 days – getting a treatment every other day & making sure the flow rate is MUCH slower.
Hopefully once you’ve had some treatments without side effects you will be able to transfer over to home care. It’s been so much easier on Emily to have her treatments done at home.
January 6, 2012 at 3:24 pm
Good News !!!! I am glad you finally got some answers and that the IVIG is working for you. That is the easiest, safest and treatment with the least side effects, so it is great that it is working for you 🙂 Lori
January 7, 2012 at 3:59 pm
Thank yall all so much!!! I really appreciate all of yalls help!
Thanks Shellbones!! I am a little nervous that I havne’t heard when my next treatment is (my appointment was thursday and they ordered it then, the home health was supposed to contact me, but it’s saturday and still nothing – so I’m 3 weeks 1 day out from when i started the loading dose. I hope it will be in the next few days though!
Kelly- thank you!! I’m not sure how many grams I got as my loading dose- they did do it in 3 days though, So i’m not sure if they gave me a smaller dose or really packd a lot in a short amount of time! They are trying to do it through home health this next dose… just waiting to know when! I hope I don’t need another loading dose, but I have wondered the same thing – it woudln’t hurt right? I’ll do that forumla to make sure my maintenence dose is right too.. thanks for that! I weigh 124lbs (lost a lot of weight when I initially got sick with the intestinal stuff after the IUD/blood transfusion fun). When I looked up toxic neuropathy looks like it can be caused by toxic substances and drugs, which isn’t the case with me (unless they seriously forgot to tell me something!) I think maybe that was just the code for billing – that it is inflammatory and toxic.. not sure if they can just select inflammatory.. They also have CIDP as a diagnosis now too.. After being in the hospital for a week the idea of being at home for treatment sounds GREAT! I will just tell the nurse to go SLOW and they also ordered IV fluids to go with it to prevent side effects too!
Thanks lori! I’m excited to think that I will hopefully get better, or at least not worse! It has been SOOOO stressful going through the unkown, especially fearing far worse things!! The one big downside to IVIG appears to be cost- we just got our bill summary from my hospital stay and WOOOOOWW!! I had NO IDEA that it would be THAT expensive- i kew it wouldn’t be cheap, but it was A LOT!!! Hopefully insurance will be paying for it all!! goodness! It worries me that we could meet our lifetime maximum fairly quick with IVIG treatments! but as long as it works, we’ll do what we gotta do!
Thanks again yall for all of your help! I REALLY appreciate it!
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