Hi there and welcome to the group!

What you are referring to are subcutaneous (under the skin) infusions. The are different from injections as they can take anywhere from 1 to several hours. You insert tiny needles in your skin and the medicine goes in at a slow pace. This is not a bandaid. This is not a cure but a life saving treatment. For most, it takes time to notice the treatments are working. It will be a gradual improvement process. For some, the infusions help their joint pain but each person is different and there is really no way to know if it will help yours or not. The intentions of the treatments are to reduce the severity and frequency of your infections. This is a wonderful group you have found, very supportive and amazing people :) Ask them anything!

My life changed substantially in a HUGE way when I started treatment for CVID. I have a better life than I had growing up (wasn't diagnosed until 2005 and was sick ALL the time up to that time). I think you will be happy with your treatments once you are comfortable with them and see the benefit. Good luck to you! Do not look at it as a death sentence...one can live with CVID into their elder years with treatment. Hugs!

Hi everone and also welcome to the group; , Sub-Q gives you alot more freedom and it can also be a brees! When i started on sub-q i was on hizentra 8g 20% fluit so it took me 45mins to infuse,but i started to get sick from it ,headachs,my eyes hurt,stiff neck,sick at the stomach ! And so my doctor changed me to Gamunex -C , 2.5+5g=7.5g ,10%fluit so now i have to use three needles and two plungers because the fluit is thinner but now it only take me 20mins to infuse and i've had no side affect with this med ! Plus i can walk around with it or eat,watch T.V. I do my infushion in my tummy and sometimes i don't even feel the needle go in ,it is good to put it in a area with alot of fatty tissue ! I hope this help you somewhat !!!

Welcome to the group. I am glad that you found us. I have been on ivig for 5 going on 6 years. I never have done subq but I know that it does work well for alot of people. My joint issues are alot less since being on the ivig. Let us know if you have any questions. My first advice is to always make sure you increase your fluid intake the day before, the day of, and the day after the treatment.

Hey, welcome to the group! It's great that you have finally received answers, and that your treatment is beginning so quickly after diagnosis. Sub Q immunoglobin is a plasma derived product and it is being infused to place antibodies in your body that you cannot produce on your own in hopes that you can have a defense system that can keep you from being so sick. Everyone handles infusions differently. It is extremely important that you are staying hydrated at the time of your infusions. Hydration often times prevents a lot of potential side effects. Some people will experience headaches, nausea, fatigue, or aches at treatment time. There are a lot of things that can be tweaked for reactions such as medication brand, flowrate, premeds. It can be overwhelming but you have found an amazing group, and we will help answer your questions as best we can. Good luck with your first infusion:)

I have been doing SubQ IG for a couple years. I am concerned about your joint issues, I have something similar to lupus with CVID, and my SubQ IG has actually caused my joint pain to increase on days I have infused (if I do not take an anti-inflammatory). I know there is a general joint condition associated with CVID and I assumed that was all I had, until my heart and lungs were attacked.

Did anyone check your ANA profile (not just a general ANA)? Sometimes the subtypes are high without a high overall ANA because of CVID. In my case my SSA and SSB are high and my overall ANA is low. From what I have heard from my pharmacist, none of the IG products are screened for ANA anti-bodies or for that matter proteins that would activate ANA anti-bodies.

That said, SubQ IG has made my life better than it would be without it. It is not a cure, but it makes a difference!

Thanks for the replies !

I have had lots of blood work - ruled out all sorts of things. I thought I had rheumatoid, lupus, etc. but nothing shows (no RF factor, normal ANA, etc.). The pneumonia and chest infections found the low IgG and here I am after 3 years of worsening joint pain, fatigue, and catching every cold and then some.

Today I did my first SubQ....kind of surreal ! I will do hizenta 4x a week, 10 ml a time for the first month and then bloodwork to see what happens(ed). Came out of the clinic with bags of stuff - product, syringes, wipes, needles, butterflies....wow. Tummy feels a little bruised but not bad. Otherwise, I feel normal...my normal...time will tell I guess.