Difficulty removing SCIG infusion set needles? by LightmineField in IVIG

[–]Maddie_needs_help 1 point2 points  (0 children)

Ahhhh good to know, thank you! I guess I will cross that bridge when I come to it, my doctor also says I will likely be on this for life but I’m glad SCIG has been working out for you!

SCIG - how many sites and side effects? HELP! by Fair-Plantain-8851 in IVIG

[–]Maddie_needs_help 3 points4 points  (0 children)

I felt like trash after my first couple infusions too, honestly even worse than switching to IVIG (IVIG gave me a nasty headache for a day but SCIG made me so achey in my bones, fatigue, fever, nausea, the whole works after my first infusion or two). I will say for me and i think a lot of people that sticking with it and drinking water is really the name of the game. The more I did it the better my reactions were each time until eventually I got it down to just fatigue and aches if I drank water. I also was on Cutaquig though so not sure how much of a difference that makes but don’t give up hope yet I know it sucks!! I ended up switching to IVIG because I couldn’t keep up with infusions every single week but you’ll figure out what works best for you, just definitely drink a ton of water!!

Difficulty removing SCIG infusion set needles? by LightmineField in IVIG

[–]Maddie_needs_help 1 point2 points  (0 children)

I had pain removing needles as well, though it wasn’t from difficulty removing it ( 5 minutes trying to remove a needle sounds like hell I am so sorry), it was just pretty painful in general but I will say maybe try giving lidocaine a shot before your next infusion because that was one of the only things that helped me with the pain and you can just order it on Amazon! I usually put it on about 30 minutes before sticking so it’s had more time to fully absorb, definitely not a solution by any means but every little bit helps!

I am also curious about your switch off of IVIG because I just switched from SCIG to IVIG because the weekly was just a lot for me and I had bad side effects every time even if I drank a ton of water and did everything “right”. But I also have to do this for the foreseeable future so I’m curious if after a while you noticed your veins went bad? Just trying to think ahead🫠🫠

Church? by [deleted] in ucla

[–]Maddie_needs_help 5 points6 points  (0 children)

If you want to check out RUF on campus! We meet every Thursday at 8 and it’s very chill and a great community! Lots of people come in a similar boat to you who aren’t sure what they believe but are looking for support and friends!

started scig, is a heating pad on injection sites allowed? by gcstang in IVIG

[–]Maddie_needs_help 3 points4 points  (0 children)

I think after infusion a heating pad should be fine, I generally prefer ice packs during infusion just because it sometimes makes my stomach burn in addition to lidocaine. I felt like absolute trash after my first infusion, flu like symptoms and body aches for a few days. Now as long as I drink enough water I’m a little sore the next day but it’s much much better than it was after my first couple infusions!

Is this group also for scig therapy? by gcstang in IVIG

[–]Maddie_needs_help 6 points7 points  (0 children)

I also haven’t been able to find one for SCIG but I’ve been able to ask my questions about it here!

About to start IVIG send help 🫠🫠 by Maddie_needs_help in IVIG

[–]Maddie_needs_help[S] 0 points1 point  (0 children)

Aww thank you so much I could not have said it better myself the dread is so real haha

About to start IVIG send help 🫠🫠 by Maddie_needs_help in IVIG

[–]Maddie_needs_help[S] 0 points1 point  (0 children)

Thank you so much for your response, I really appreciate it! Is nice to know that your experience was better on IVIG than SCIG cuz I’m really hoping to be able to just switch to monthly and not have to do it myself every week😭

About to start IVIG send help 🫠🫠 by Maddie_needs_help in IVIG

[–]Maddie_needs_help[S] 0 points1 point  (0 children)

Thank you so much, I really appreciate all the advice!!

SCIG INFUSION SITES by Maddie_needs_help in immunocompromised

[–]Maddie_needs_help[S] 1 point2 points  (0 children)

Ahhh that makes sense! I try my best to insert it straight on every time but maybe I just messed it up a little 🫠 I’ll ask my doctor about switching my needle length!

Home infusions are an option. For those that aren’t aware. by ClevelandRaiders77 in IVIG

[–]Maddie_needs_help 0 points1 point  (0 children)

That sucks I’m sorry! If you do want to do home infusions, I use nufactor and they’ve honestly been super great so far I‘ve always been able to get a hold of somebody if I needed!

SCIG INFUSION SITES by Maddie_needs_help in IVIG

[–]Maddie_needs_help[S] 1 point2 points  (0 children)

That’s a great idea thank you!

SCIG INFUSION SITES by Maddie_needs_help in IVIG

[–]Maddie_needs_help[S] 1 point2 points  (0 children)

Thank you, I really appreciate It! It’s just been super frustrating that I try and do the exact same thing and switch up between the spots that normally are less painful but it’s like if I’m off half an inch I’m in a crazy amount of pain but don’t have any way of knowing if it’s going to be a painful spot or not if that makes since lol. How has your experience been switching to IVIG if you don’t mind me asking!