Hello everyone! hope yall are all doing well.. I had a question about IVIG .. I had been getting it every 2 weeks, and am trying to stretch it out to every 3.. though I don't know how good of an idea it is, as I get jello fingered, can't swallow well, waddle and jello legs during the few days I have before that 3 week mark (I'm due for it on Monday, but typing is difficult as my fingers are so jelly like)!

As nice as it has been doing every 3 weeks, i think i probably need to do every 2 again.. but honestly my veins were getting so messed up from it.. and still are that I don't think they can tolerate it any more often.. Does anyone else have this problem?? My veins HURT after the IVIG.. from where they put the IV (usually wrist).. all the way up the arm, and both legs will have phlebitis/tender veins for at least 2 weeks afterwards..they just feel raw.. anyone have this?? I used to get rashes from the IVIG.. but no longer do

What do yall think would be the next step- since I don't have a firm diagnosis.. is trying an immunosuppressant what most people do, or mestinon just to see if it helps? They think I may have crohns too, so in that case an immunosuppresant would be what I would need for that. The thought of suppressing my immune system scares me so much as I am always sick from my kiddos already!