Yes, I have been losing my hair for a good while now. I was only diagnosed with CVID in May and the hair loss started qay before that. I also have Epilepsy and I have always thought it may be from my seizure meds but I'm not sure. Glad to know I am not alone. God bless you all!

I wanted to add that the top docs recommend getting a baseline CT scan of lungs (sometime sinuses) when you are diagnosed with CVID. I know what does this have to do with hairloss right? Well I developed a lung disease (pretty rare in us) from the CVID and when my lungs relapse, my hair falls out (lots of other symptoms too but this is the most noticeable). If you have had one yet, please press your docs to do one. My docs refuse to believe my hairloss is from my lungs but I can tell you when I relapse my body does some kooky things and I know before the ct scan is ever done I'm sick again. I take biotin in large doses when it happens, wash my hair less, try to wear it natural, whatever I can to help lessen the loss ((hugs))

I'm really struggling with hair loss too.
I've been shedding a lot for a few months and now I have a few bald spots and overall thinning. Thankfully the bald spots are by my neck.
My friend is going to help me figure out how bad it is soon.

I haven't been on steroids in years, no recent major illness, and I haven't started any treatments.

I'm hoping the problem is my very low ferritin (it's was a 2... 10 is the bottom of the range but most doctors say a minimum of 50-70 is needed for hair regrowth).
Hematologist told me I'm wrong and low ferritin should have no effect on me at all, but he's willing to give me an iron infusion.

I'm taking biotin and trying to be very gentle with my hair (washing less, preventing knots, combing with my fingers with conditioner in).

I'll ask about a lung CT scan at my next appointment, my doctor only ordered a sinus CT scan.

I honestly cannot tell you how it ties together with the lungs...some sort of autoimmune reaction it seems, when I grow nodules. Hair falls out, debilitating fatigue, memory & speech issues, rash on my arm, random swelling. I posted pics of most things on here...crazy. Its good practice with CVID to get a baseline CT when diagnosed....just sharing my personal story about my lung disease and how my body reacts. You never know right? We have such crazy things that happen to us :(

I was on google and I found this support group, so glad I did. I am a CVID patient and I have been experiencing hair loss and I find out that I am not alone. It seems to be a common problem with IVIG treatments. I have tried switching shampoo and conditioners, taking Biotin, hair treatments, but no success. It seems we are stuck with this side effect.

YES Biotin in big big amounts. The CVID means your body is compromised already. I lost gobs of hair and was almost bald in the six months prior to my dx. I now take 10 milligrams NOT micrograms (the most common supplements are just MICROgrams) and my dermatologist told me to multiply the dose by 20!! per day. So I started taking the big dose and yup, he was right. It's almost all back!

Yes, just reading this post here. I to have had hair loss and believe its from the Gammagard. Its very drying. My hair dresser has cut off a good amount because it has become dry and damaged. I agree too, with the other responses. I have also bought and am trying biotin.

Know I am a little late to the party, but just had my first IVIG treatment in the infusion center on Thursday & I woke up this morning to a pillow full of hair & after I showered & brushed my hair, my brush was FULL of hair....I am not talking a little bit of hair but a handful.. and I have very thin & fine hair to start with...If this continues, I will be bald by the end of next week.... Please tell me it stops...
Cheryl

My hair falls out like crazy too... I don't have any bald spots... But I have found I "shed" way more when my GI issues are acting up... And I also noticed this was never a problem before I started treatments... Makes me wonder if it's a weird treatment side effect or my body just failing at life.

Each time I have a course of high dose ivig I completely loose my hair. That's hair everywhere!!! When I'm having my weekly scig I'm fine!!!!

Who knows. No one has really been able to explain it too me. It's not really a traumatic hospital event as they are just standard hospitalisations now.

Another one of the joys of CVID. I'm not sure what's worse going bald every 6-8 months or wearing pull ups all day every day because of a bowel that no longer wants to play the game!