I'm looking into self SubQ my IVIg...is anyone else on this program or treatment.

I'm really interested in hearing from someone that's been on it for a while and is it as effective as regular IVIg infusions.

I just learned about this procedure last week when I was in for my IVIg the nurse mentioned it to me and said it's done once a week and could save me time and money.

I seeing a Specialist and RN on June 22nd to see if I'd be eligible for the program, I think I'd be willing to try it out, the nurse told me it tends to irritate and bruise the injection sites so when you take your shirt of it will show...

Well, that would be a good conversation starter!

I haven't had experience with SubQ/Hizentra, but someone I know has. The treatment isn't as effective as regular IVIG. The upside is that you can learn to do it at home, if you can handle the needle aspect of it. SubQ may lessen the potential for headaches, but you would still need to use Benadryl and Tylenol beforehand and drink lots of water.

I hope others have tried this and will chime in. If SubQ works for you, that would be great.

Annie

I've seen somebody on YouTube who is doing IVIG at home. That person (Mary Frey) has a port, and she was trained on how to self-administer the treatments by a home nurse. She is not using it for myasthenia gravis, but as an experimental treatment for cystic fibrosis. If you want to look it up, the YouTube account is The Frey Life. I imagine it would be hard to get this approved for home treatment. Depending on your insurance coverage, it could be difficult to get Sub-Q treatment approved also. I know that I was told it would never be covered, and I would always have to go to the clinic for IVIG treatments for the year that I was on it. I inquired about it also.

Best wishes,
Erin

Hello!!!

I have been on SubQ IG x almost 2 years... and it is a game changer!!! I Have gotten aseptic meningitis from IVIG two times really badly and milder multiple times... so the rate had to be so slow that the infusion would take 7-8 hours plus drive time and never feeling great the day after - my veins were always so sore.... plus its hard schedulewise!

Though i will say I never feel as controlled as my best control on IVIG.. it's much more steady... i usually feel pretty well controlled.. whereas with IVIG the 4th day after and for that next week or a little more I'd feel near normal.. but then I"d feel pretty low and really struggle to make it to the next infusion - which i was doing every 3 weeks.. probably needed every 2 .. but after doing every 2 for 2 years.. i tried to extend to 3

i do it myself at home once a week - with a little pump, and tubing that has 5 little needles (I inject in my thighs - as my tummy it left buldges that lasted too long.. thighs are easier to hide).. it' takes about 1.5/2 hours and done.. I take benadryl only... and i don't get side effects.. it has truly been a life saver and a lifestyle helper!

let me know if you have any other questions!!!

I have​ no problem with needles, as for headaches and having to take benadryl so far no need with my regular treatment every 3rd week.

it takes me a little over 3hrs for 80 grams or 4 bottles​ of 200mg at full rate of 400ml/hr from start to finish.

Side effects are very low so far it's been a little over a year now I've been off PlasmaPheresies, I've had 84 in all on weekly basis...I find IVIg not as effective as plexes my symthoms are more apperent I have a lot of bulbur difficulty speaking and eating since IVIg but my overall is better, more energy for one and my blood work results are back to normal, no more having to take iron supplements and red and white blood cells are back up but like I mentioned other problems surface.

Doctor's are going to see if we go from 3 to 2 weeks for regular infusions or try a weekly SubQ and see on how I react, they seem to think that a weekly infusion might be more beneficial in my case...and might help me with my bulbur symptoms.

As for insurance we Canucks are pretty lucky it's all covered once approved by our Specialists...