[bny806]

For those of you that have tried Subq ivig - did you find it seemed to be as effective? I am on week 3 of it.. and I'm starting to decline.. i havne't felt awesome the past 2 weeks.. my fingers are getting floppy (as my whole body is starting too), so typing is getting more difficult .. I am LOVING that i don't have to go to an infusion center, and that I dont' get asepetic meningitis sympotms or anything, but it's upsettting that I feel like it's not working as well : ( Just curious if this is typical...

[4-eyes]

Hi,

I've been wondering if you started sub q. Do you use Gamunex or Hizentra?

I find it's pretty comparable to IVIG. I used Hizentra for 18 mos, but my insurance refused to provide it any more but they will let me use Gamunex. I've been on it for almost 2 mos. I think I prefer the Gam.

Have you ever had a flare up while using IVIG? If so, it may just be the nature of the MG beast. I still have flares about once a month, despite using the IG. I'm just lucky that way.

Hope this helps. Good luck to you.

[bny806]

Thanks for your reply!! I have had PLENTY of flares the past 5 years while on IVIG.. but have been doing fairly well the past 1.5 years with IVIG every 3 weeks and a loading dose every year (now we are getting close to when I usually do my "re"loading dose - the end of the year).. But, I just left my stressful job - no more crazy hours, so I expected to be better, and in some ways I am.. but my weakness has been worse this past week, i haven't had butter fingers this bad in over 1 year..

I am on Hizentra... I LOVED gammunex.. was on it for 4.5 years IV.. why do you prefer it over the hizentra subq? I LOVE infusing at home, and that it only takes about an hour vs 7-8 hours.

Speaking of flares- i'm always nervous about the flu shot - do you get yours? I hear it's not very effective this year, and I have pretty bad leukopenia (wbc of 3.1 three weeks ago)... don't know if it's worth the risk (has caused exacerbations in the past).. eek!

Thanks!

[4-eyes]

The Gam is more volume, but it seems to absorb more quickly, with less skin involvement for me. You must not use much med if it only takes you an hour. I use 20 grams per week. It takes about 2.5 hours to infuse.

No, I never do flu shots. I do keep a script of Tamiflu in the house, though. The IG itself is great for preventing infections.

Good luck.

[bny806]

Thanks!!! Since I Have the severe small fiber neuropathy and all of that stuff as well, they were always concerned if maybe i had CIDP, though LEMS was aboe it on the list.. so the flu shot really concerns me.. but so does getting sick!

I do 20g weekly as well.. Once I set everything up and all (which takes a while), it takes i think just barely over an hour.. i was doing 50g every 3 weeks.. i feel like it kicked in 2 days later and feel better now.. I was excited that I ate a steak at a friends house tonight and didn't almost choke - last time I was there I could barely eat any as I couldn't chew (jaws) or swallow well.. and that was on IVIG.. so maybe it is working ?!!