Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Well, I am finally going to be starting IG therapy. Nexe week, I will have IVIG in the hospital to monitor for side effects. After that, I will be using SCIG on a weekly basis. I feel good that we have a course of action! Not too worried about starting, but have a few questions. While I was there, he figured out some type of equation that indicated I would start to 30 ml of Hizentra to start out. Is this the usual amount? I also see everyone talking about tubing and rates. Can anyone give me a primer on IGg therapy, and what I might expect when i start sub-1? What about the tubing, etc.
Thanks!
Thanks!
Congratulations on starting treatment! There are quite a few of us here who are on (or were on, as in my case) SubQ (SCIG), and you can get a lot of tips...for me, Mcknighw was my guru who helped me figure out how I wanted to do it, but as usual, everyone is helpful. :)
There are a lot of factors involved with calculating the starting dose, and when you get your Hizentra starter kit, you will find the Hizentra patient information insert tucked into just about every item. The calculation is listed there, and it's just a guideline based on weight...I don't remember what other factors are involved, but as you progress in treatment, you doctor should check your bloodwork periodically to see how much the Hizentra is helping and also evaluate how frequently you're getting infections, and adjust your dosage accordingly.
Rate tubing is a single medical tube that connects your pump to the needle tube (which will branch out to the number of needles that you use). The diameter of the rate tube determines how fast the Hizentra will flow into your body. If, during your infusion, you find that you have big lumps forming and it's painful during your infusion, that's a good indication that you need a slower rate tube. Your nurse should keep an eye on your infusion sites and teach you what to look for and report back to the doctor if she thinks the infusion is too fast. Also, keep track of how you feel afterwards, because symptoms like breathing problems, backache and headache can be minimized by having a slower infusion (that's true of the IV kind too). Your nurse should also visit you for your first few times to make sure that you're comfortable before leaving you to do it on your own. My nurse just verbally waked me through step-by-step, and I did my own infusions from day 1...I highly recommend that as it made me much more comfortable to truly do it on my own when the time came.
Some other tips are:
Use a heating pad during and after your infusion (right over the injection sites)--it will help your body absorb the Hizentra faster and make the infusion and recovering time easier.
Never apply ice to the infusion site--it will make the Hizentra harden into lumps under your skin that can take weeks to dissolve
Hydrate, hydrate, hydrate!!! Before, during, and after infusion (1 day both sides of infusion day)
More tips can be found at these locations:
Discussion: http://www.dailystrength.org/c/Common_Variable_Immunodeficiency/forum/10959913-subq-tips
Blog:
http://cvidtheelusivedisease.blogspot.com/p/tips-for-successful-treatment.html
(needs updated a bit, but will get you through general stuff....also, search for Hizentra (should be around 10/10) and you can see photos of the welcome kit, etc.
When I first started on SubQ I was given 25mg. After three months, my IG levels were still not in the normal range. At that time, I switched doctors and was put on 40mg. For me, even though I still have minor infections, that seems to be the right dose. As PB said, it depends on your weight and how well you respond to treatment.
Also, please ask them for at least three needles. The more needles, the less swelling. Rule of thumb is 15ml per infusion site but I found that 15ml per site caused too much swelling. (There was one time when I injected my stomach that the injection sites swelled up larger than my breasts. My boyfriend still mentions that particular day...)
And try out different body areas to inject. I started with my stomach but I have far less pain and swelling when I inject my legs instead.
And this bears repeating: hydrate, hydrate, hydrate.
Good luck and once again, congratulations!!
Tina
PB - that you for all that information!
Tina - same goes to you!