IVIg dose
 

My daughter got her first IVIg treatment about three of weeks ago. She received a low dose of 0.4 g/kg/day. She is 160 lbs so this was 29 g of IVIg per day for 5 days. I've read that 2 g/kg/day is often given for an initial dose though. It appears that you got a dose between these two dosing levels.

To figure out your weight in kg take your weight in lbs then divide by 2.2. For example, to calculate a 0.4 g/kg dose you would do the following:
125 lbs. / 2.2 = 56.8 kg X 0.4 = 22.7 g of IVIg

Sarah

3 weeks is EXACTLY when IVIG wears off. I've also been having this problem of hoarseness with my voice, much worse lately. I simply can't talk on the phone much or talk much at all, I get hoarse very quickly and the hoarseness very soon leads to shortness of breath and breathing issues that will last for hours....but that has been going on since before I even knew I had MG.

bny806,
As far as your questions, when my meds wear off I can feel the first symptoms in my face, it is difficult to smile and my eyes tend to feel heavy. When I was first diagnosed, my voice was so nasally I sounded like Kermit the frog for months, but it will get better when you get the disease under control. I'd say the trembling is from the MG also, very common for me even now that I'm under good control. My onset came slowly over the course of 6 months so I can't really pin it on any one event. But my doc wants me to get an IUD when I start on Cellcept next month, do you have any recommendation on that?

Thank yall so much!! I really appreciate it!! Thanks for the formula Sarah- good that means maybe I was getting a little above the needed dose- I was worried after the lady next to me was getting 100G!!!! (and she was a "normal" size person)! and the nurse said i was on a low dose with my little 30g!

Tracy- glad to hear i'm not alone with the voice thing!!! It's so strange that 3 weeks is the magic, or not so magic, number that it wears off in most people!!! All of this autoimmune stuff is just interesting!

leanneh6- Thanks!!!! I'm glad to hear i'm not alone with those symptoms!!! My face feels the exact same way!!! I can smile for a while, but then it's like I wear it out, and i'm done,can't smile for a while at all!! Voice gets nasally at night/end of the day too! So strange this all is! As far as the IUD goes.. that is just about the biggest regret I have my whole life is getting that thing.... however, that's only because they perforated my uterus (a VERY VERY rare complication), I was healthy before that, and since for the past 8 months have been afraid I had a terminal disease (MND disease after a dr told me he was concerned I had ALS!!).. now I obviously had some underlying autoiummune issue brewing or else the "trauma" of the IUD incident woudln't have triggered something.. but I alwyas think what if that never happened.. I Have a blood clotting disorder (MTHFR) so an IUD was the only "safe" temporary option for us (I wanted to have my tubes tied, but at 30 my hubby and dr thought we should wait). that all being said, i think usually the IUD is safe and a good option.. I think a lot of people like it.. however I know a lot of people who have gotten pregnant with one (and with pills etc however), or had complications (bleeding or pain).
Does your dr want you on it just due to it being a reliable form of birth control while on cellcept? If that's the main reason- if you set an alarm for your pill and ALWAYS take it at the same time each day and avoid interacting meds/herbs (st johns wart etc) then it's the same reliability as the IUD from what I am aware of... I don't go into ANY procedure lightly anymore, after the IUD thing happened.. but like I said for most people it's not a problem at all! It wasn't painful at all (except when they perforated me) and I think i would have liked it if it wasn't for the complication I had (user error on the Dr's part), but hey stuff happens I suppose.. so it is what it is! Good luck! Hope the cellcept works well too!!

Seamus,

my memory has also been effected by either the MG or the Cellcept. I don't which has been the cause. I can forget things in an instant. I have been on Cellcept for five years. I assume its the result of taking the Cellcept. but I'm not going to get off the Cellcept to verify my theory that its the Cellcept causing my problems. I didn't have these memory issues before my journey with MG began.

Along with the memory issues i feel a slight mental grogginess most of the time. Like I want to just rest for a while. Usually when I can get out and walk for awhile the grogginess diminishes. So don't feel like your all alone with this issue. I'm trying to figure things out myself.

thanks