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.

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fatigue after infusions-getting blue and crying

ninagalpeerdanielson
ninagalpeerdanielson
I find that after IVIG I am very, very tired and depleted for the next 2or 3 days. Is this normal? I am also worried because, when not well, I get so down sometimes and cry at the drop of a pin. I have just moved to the North (again) from S.C. At Mass. General they changed my meds, upped the dose and changed infusions to every 3 weeks. For this reason, I feel more secure. I feel alone right now and don't know what's normal and I really need help as I could cry now. Thank you
jenbeth81
jenbeth81
I felt really really tired after IVIG also. I wanted to nap but couldn't because I felt so weird afterwards. I have just switched to sq but from what I have read on here it seems many experience fatigue also. I haven't been feeling so great past week or two and have been feeling real down also. I was feeling really good about things for a while and was accepting all this shit as my new normal, but last few days have been crying on and off. Sorry you are going through a tough time I hope it gets better. Hugs
ninagalpeerdanielson
ninagalpeerdanielson
Thank you Jen-
This information makes me feel less frightened and more normal (for our normal). Again- hope you feel better and thanks. Hope the blues go away. X
kelli1b
kelli1b
What you are experiencing is normal. They say you can feel as if you have "flu like symptoms". Just think, you're adding 10,000 donors antibodies into your system, its working hard!

It sounds as if you need some support from people who understand what you are going through. Have you thought about reaching out?
MyIGSource has advocates that either have PI or have kids who have PI. It doesn't matter what product you are on, it is free: 855-250-5111 AND the Immune Deficiency Foundation also has peer support volunteers they can connect you with in your area: primaryimmune.org. Both are wonderful organizations.
sjodry
sjodry
Nina,

I always feel very fatigued after my infusions. It happens typically from 24 ~ 48 hours after my infusion.

It is very normal to feel overwhelmed and depressed about having chronic illness. I know that with the autoimmune issues that were caused by my CVID, depression can actually be an organic symptom of the illness. That is, depression can be an actual symptom...just like joint pain and neuropathy, etc.

I am a huge advocate of support groups. I actually run one where I live. Online forums, like this one, are very helpful. Also, finding other outlets. I enjoy writing..which is a nice escape from my chronic illness.

We all have those days or moments when we just want to cry. That's okay. I have complete pity parties which include Hallmark movies, fluff magazines and whatever amount of chocolate that I deem necessary. But I give myself a boundary (time limit) for them to start & end. I work FT..so they have to happen on a weekend & end before Monday a.m.

Seriously, it is not always that easy to turn off those sad feelings with a short time table. But reaching out to support groups or even a therapist can be very beneficial to moving the process along.

And being a southern belle from down south...I know I would be depressed about leaving that nice warm climate (I still am after 35 years) . Maybe there is a touch of that going on.

I hope things start to look up for you Nina.
Take Care.
SjoDry