I would like to get more information on IGG by subcutaneous infusion rather than IV infusion. Has anyone had this done? Thanks for any input.

I hear it has much less side effects than IV... did you do well with the IV IVIG? how are you? How's DAP working out? Hopefully someone on here can give you more insight!

It can be done, and I asked about it for myself at one point. In my case it was discouraged due to the dosage I need. I was told I would need so many injection sites to get the amount in that I need--something like 10 or 15. Each of those swells up as the drug goes in...and that would need to be done weekly. I think it would get "old" really fast.

It's definitely something worth exploring, as the technology has improved a lot since I asked about it 6 or 7 years ago. If you learn anything, please post back to us!

Bny806, I am doing well on the Dap, but it has not made me perfect. My muscles are much stronger for longer periods, but I still have the swallowing issues along with breathing problems and occasional drops in blood pressure when rising. Definite improvement. I tried to get plasmapheresis again to get my swallowing and breathing improvement, but had issues with doctors office staff not following through, so on an emergent basis, my Dap doctor ordered a high dose of Ivig for two days, June 26-27. I contracted aseptic meningitis from it, but after I recovered from that, I started getting results from the Ivig. Swallowing has improved somewhat, energy levels are higher. Even though I am not normal at the moment, it is acceptable. Still can't stand very long, but much longer than before. I have been able to engage in some of the activities that I had all but given up
My local neuro does not want me to have Ivig again because of the meningitis, and from the way my Dap Dr. talked,I don't think he is wanting to do it either.

So, since subcutaneous is not supposed to cause the same reaction, I thought it may be a possibility in my case, but wanted to get more firsthand user info before I ask about it.
I have been switched to another nephrologist to oversee plasmapheresis, but don't see him until the 25th, so wanted to have a backup plan in case I get in trouble before plasmapheresis is available again. Thank you all for your input.

I'm so glad that it seemed to have worked some, despite the aspetic meningitis.... THey initially told me I couldn't have it again either.. and I had meningitis bad (i had 103 temp and walking killed my spine from tailbone to brain)... but my main neuro said it was fine to get it again.. I've had meningitis twice since, but milder.. and everytime its completely dependent on the rate... Do you know what rate they infused you? I coiuldn't go above 70, for almost a year.... if we went any higher - the chest pain would start and then I would start spiking a temp.. it was the strangest thing... so it would take 9 or so hours to infuse.. BUT i wouldn't get meninigitis, so I just had to let my bum hurt from sitting that long on it each time!!

Now, almost 2 years later we can get up to 100 on my rate.. .. are they, and you, open to seeing if going at a super low rate plus extra hydration may do the trick? For me when I get meningitis the IVIG doesn't seem as affected as well.. so to not feel bad from that plus the benifits of IVIG is nice..

Do your muscles tremble when they are tired? Mine do! from face to legs.. glad your doing better.. hope they figure something out for you!!

I don't know the rate I was infused, but the first day it was 70 grams infused over seven hours. The second day they slowed the rate because my headache was getting unbearable, so it took about nine hours, but I got meningitis anyway. I would think that it would have to be done over more days to keep the side effects down.

I had asked about subcutaneous IGG and found out to get the dosage that is used for MG, it would be impractical as it would take many sites so subcutaneous infusions, each area blowing up like a ballon for a while.

It seems that IGG is used for conditions requiring far less systemic absorption and overall dosage.

Joe

Thanks Joe--that's what I was told as well.

As an aside, I used to read a blog of a woman who used it for an immune dysfunction. She wrote about many of the same side effects we have with IVIG, as well as itchy, uncomfortable skin in the injections sites. She used it weekly....didn't sound any better in the long run than IVIG.

Doesn't sound too promising, then. Oh well, I go to a new nephrologist Thursday. Maybe he will get me back on plasmapheresis, which I know works for me and I don't have to wait two weeks or get meningitis.

Limpy, are the plasmapharesis side effects as bad as IVIG? Did you have to get a port or do they do a pic line? How much pf a hassle is the port/pic?

I am afraid of doing the IVIG again because of the bad reaction. I am also afraid of going through the hassle of a port for the short term if I really want a thymectomy. Any guidance would be appreciated.

thanks
kathie