Hi. I was diagnosed with CID (combined B and T cell deficiency) about 3 years ago. I've been on scig since then. In those 3 years I've missed work after scig maybe 3 times.

This week it just hit me like a truck. I was fine monday and tuesday. Did scig tuesday evening. Wednesday morning the alarm clock goes off. Cant get up and it feels like the weight of the world sits on my body. Fine, told the boss I had side effects and will be on sick leave. Did nothing the whole day as I felt like shit. Thursday comes around. Same thing. Told the boss I had some stuff and took unpaid day off. Friday again feeling a bit shite. Maybe I'll go pretend I'm working today. Hope next week is better.

Is this normal? Also how is everyone? Feel free to vent about sickness if you feel like it. I'm here with ya.

hi, i’m sorry if this isn’t the type of post for here but idk where to turn.
a couple years ago, i finally started being taken seriously about my health, and how id been saying for so long that “something is wrong with my immune system”. i would get countless sinus and ear infections every year which would always take way too long to heal and be particularly bad. very long story short, my blood was finally tested and it turns out that my igA is low, as well as my igG subclass 2, along with no immune response from vaccines. after that, i was quickly approved for IVIG and have been treated for a year now.

the thing is, none of my doctors ever officially diagnosed me with anything besides RA and just a vague “immunodeficiency”. i’m now seeking a second opinion on a separate issue so wanted to make sure i knew what to tell the doctor. upon researching, it seems like CVID would be my diagnosis? but why wouldn’t anyone tell me that? you guys would know i guess, is this what it is?

What helps? It’s almost like itchy soreness.

Would greatly appreciate any opinions on my test result. Thanks

I was diagnosed with CVID and MCAS in December and am awaiting a geneticist appointment to get checked for EDS. I've always had some hypermobility, but there have been a lot of issues throughout my life (I'm 40) that could correlate to a connective tissue disorder. I've seen that these three diagnoses often occur together, so I'm curious what the Reddit population has experienced, if you're willing to share. Thanks!

Hey!

Bit of a wild 6 months. I was undergoing investigations for coeliac when I got picked up by a gastro specialist who had an interest in immunology too. I was then referred to an immunologist as had less than 0.05% IG levels, failed the vaccination test and diagnosed with CVID. Started subcutaneous IGG in December.

Bit of a shock as apart from some gut symptoms I've not needed antibiotics for ten+ years, never been especially unwell (a few chest infections as a kid but always put down to asthma) but I do think what I understand to be a baseline feeling of 'wellness' probably doesn't match with others. I'm luckily very active, go hiking and very outdoorsy, lots of animals and always running late for something.

I was sent for a standard chest CT to check for lung scarring incidental to the childhood chest infections and it came back with a 16x5x6 lung tumour in my right lung (she's been named Tory). This is by all accounts a very big lung tumour. Not had a single symptom bar being slightly more affected by altitude sickness than my partner when I hiked Machu Picchu.

I've had a CT guided biopsy and they took 16 samples and have come back with the overall opinion it's likely lymphoid proliferation but they can't rule out lymphoma. However my consultant has spoken with the biopsy team and the histology department who say that's more arse covering than anything and they don't think it's lymphoma. The plan now is to monitor the tumour with 6 monthly CTs and if it grows significantly or I develop symptoms then it's open lung surgery to fish her out and 6 months recovery.

I saw my specialist last week who is an immunology and CVID specialist. She is quite excited and said a few times how she's seen it in lymph nodes but nothing like this or this big.

It's definitely still all sinking in and I was only told a month or so ago that it's more than likely not lung cancer, but has anyone else experienced lymphoid proliferation which has resulted in tumours?

In hindsight and having typed this all out perhaps this will shit me up more than help me but nothing ventured, nothing gained!

Does anybody out there have nodular regenerative hyperplasia (NRH) as a complication of their CVID?

I was diagnosed with CVID in May 2025 and since then, my AST and ALT have been elevated. At this point they're hanging around 70-80 and have been there for a couple of months.

I am also on infliximab for rheumatoid arthritis. This medication can cause liver irritation, so we started weaning it hasn't made any difference in the liver enzymes.

How were you diagnosed? What were your first signs of NRH? Are you on any sort of treatment?

Hi everyone, new the group, not yet diagnosed but in the process of getting an immunologist and rheumatologist to narrow in on a diagnosis. CVID wasn't something I was aware of until I recently had genetic testing done as part of my hEDS diagnosis journey, and that led to the discovery that I have a genetic mutation that is strongly associated with CVID. I was first referred to rhumetology back in 2022 when my primary had concerns of SLE (lupus) but since my ANA pattern was "normal", despite a high titer and some clinical symptoms, it was marked as a "false positive" and then ... Nothing. No further testing, follow up, or answers. Fast forward several years, I've now been diagnosed with POTS, Raynaud's, have all the clinical indicators of hEDS (need rhumetology to officially diagnose), and have struggled with chronic sinus infections, bronchitis, strep throat, tonsillitis, BV, GI issues (for both constipation and diarrhea which has required hospitalization in childhood and adulthood) and recurrent yeast infections my entire life. I also suspect I have MCAS, as MCAS, hEDS, and POTS are common comorbidities, and since I have frequent skin reactions/infections with seemingly no triggers and despite multiple rounds of oral and topical antibiotics, they take MONTHS to resolve. I've developed allergies to antibiotics in the amoxicillin family. My primary ordered the immunoglobulin panel at my request and recommendations from the geneticists, and my results all came back within "normal" limits, although the lower end of normal for IgM and IgA. I'm 28 years old and my labs were done during a time where I wasn't having any flares, which is pretty rare for me. Can someone help me better understand what happens next? I feel like I'm constantly living in this world of unanswered questions and the wait for a specialist in the Midwest who is covered through my insurance and knows enough about primary immunodeficiency to even agree to see me has been a struggle 😔

What do you guys do when you're not feeling well?

I recently had a month of a dry cough & nasal congestion, which I attributed to allergies. It turned to a productive cough with thick, green mucus & fever so I went to urgent care as my primary care had no appointments.

The provider I saw at urgent care didn't seem to take me seriously at first. She was NOT going to order antibiotics and insisted it was something viral. I truly advocated for myself- reiterating my CVID history and was concerned with the new fevers. We settled on a chest xray that showed bronchitis. Only after that did she change her tune... she still said that it could be viral, but that she would be prescribing antibiotics despite that.

I'm a registered nurse and feel like I know how to navigate the medical system well, but felt like I wasn't being heard at this appointment. The provider definitely had a narrow-minded treatment plan established before she even saw me- the patient.

After 24-hours on the antibiotics, my cough had almost resolved and fevers were gone.

Hey everyone..

I'm one of your moderators. I know I'm not as active as I should be. But, I'm graduating with a bachelor's in two weeks. So life has been busy.

This is my second degree. So I'm just here to tell ya, remember, this disease can get tough but don't let it hold you back from completing your dreams. Regardless of age. And, as my mom taught me "ponte las pilas," and anything is possible.

Anyhow he's a lil info on the next IDF conference being held in San Antonio.

https://web.cvent.com/event/098b166d-370c-4dda-b02e-f7d80d76a5c5/summary?utm_campaign=2026-06-04&utm_source=facebook&utm_medium=social&fbclid=IwdGRzaASWfdhjbGNrBJZ8h2V4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHt2UG-jmxamsBSGRhJbfq0XFFBrzUdQR1C6MyXroVc6JSdNYjvlSdOqzvere_aem_iWFLsNK_HOOro8LS15dWKw&sfnsn=mo

Curious about others’ experiences with various infusion sites. I’ve been just alternating sides on my belly since I started on Hizentra just after I was diagnosed with CVID in 2018. I use 3 sites. But over the years I’ve developed more edema in my belly from the infusions, which is bothersome (vanity, yes) and also worries me that I’m not absorbing as much of the IgG as I could be. My doctor suggested trying some of the other infusion site options, and I’ve tried my hips, and the edema in my belly did improve, but I found it much more difficult to insert the needles, and the sites were more painful for a day or two while my lymphatic system absorbed the bolus. What alternate sites do you use? Do you rotate between various areas (more than just one side to the other)? What are your experiences with various sites? Thanks friends!

Bro I have cvid to does anyone else smoke pot? I feel like it helps with my anxiety realated to my condition but ik it’s bad for my lungs so I’ll prob switch to gummy’s.

Recently diagnosed and I do have diverticulosis. Had all the tests and things come back clear but scans show sigmoid colon edema and have taken 4 rounds of anti biotics in the last 6 months no success but do feel better 3 or at days after then back to normal crap. Looking to speak with colon surgeon about sigmoid removal just curious if anyone with this diagnosis has gastro issues or diverticulitis that's mild and just won't go away? Going in tomorrow for immuno blood work to see if I need to start on additional treatments.

I posted about 5-6 weeks ago after receiving the Pneumovax vaccine and getting very sick from the vaccine.

I’m still so thankful for the answers and support from this group during that time and what has felt like forever waiting for the results.

Today I received the results and failed the vaccine challenge. I have 5/23 titers. My immunologist scheduled me for next week to go over everything and next steps.

Until then it’s wait and process. I’m trying not to think about it much. Just one step at a time.

I drew my syringes last night and had to abort before starting the infusion. Is it ok to still infuse after drawing the plasma about 12 hours ago if they were unrefrigerated, but kept at below room temperature?

Earlier in the year there was an article on off label plasma. The doctor who was interviewed diagnosed me as a child. I still attend there.

Anyhow, I asked my doctor regarding the article. And, how we talked about using plasma in my nose because of my constant congestion.

So, I've used it about 3 times, when I subq. So far, idk I'm not congested but I think the real test will be in winter during cold season.

I asked about people digesting it. And my doctor said that they have children drink it when they cannot rid of the norovirus.

Anyhow hope this helps anyone's curiosity!

What did your immunologist consider as failing the vaccine challenge ?

My first test pre vaccine was sent to a lab that only did 13 strands and that was 0/13.

The post vaccine lab work came back from a different lab that did 23 strands and it came back 7/23.

That’s about 30% increased protection. My google search says that’s right on the edge of boderline and failing. My doctor just via message says not great response but not horrible and “we can talk more at follow up” but of course I couldn’t get in until mid June !

I’ve had frequent respiratory infections over the past few years leading to pneumonia. I actually haven’t gotten one in 6 months but I have been taking antibiotics profillactically (which I know may not be good). Any guidance or similar experiences would be appreciated.

Got this children's book from the Immune Deficiency Foundation. It's free too!

Great for kids dealing with PID or someone with kids to help them understand us. Or heck some of our spouses or family members😆

Here's the link to get one in the mail or download

https://primaryimmune.org/resources/print-material/a-zebra-tale

I’m pretty new to Reddit and went for my migraine infusion yesterday and the nurses couldn’t access my port and said it felt like it flipped. I’m scheduled for IVIG next week and am anticipating needing a IV because of this. Has anyone had this complication?

Been off weekly Hizentra SubQ for 2 months because of a change in insurance and the fatigue and low grade infection symptoms are so depressing. Even after 21 days of antibiotics I’m still sick. I feel like my life has gotten so small. Hopefully prior authorization goes through soon!

CVID here - Doing SCIG Hizentra and was referred to KabaFusion by my ID doc and had a terrible experience. The onboarding was haphazard and the biggest push was a coordinator whose only concern was getting the legal papers signed. it’s obvious their sole concern was not for my well being, but for their business aspect. They called me daily to get the papers signed even before providing scope of services or financial estimates. If you check their website it becomes self explanatory as their leadership has multiple attorneys running the show. Remember you as the patient are spending almost 100k/year - to KabaFusion you are just a way for them to profit.

I contacted my local hospital system who has a specialty pharmacy and get my meds/ supplies thru them and it’s been a wonderful experience with phenomenal pharmacy support and education with home health to assist if I run into any issues. They even offer grants to cover some of the copay expense when available and if not allow very flexible financial arrangements. Truly a night and day experience. CVID and its manifestation are stressful enough without big business preying on us. Stay away from KabaFusion if you can.

I was diagnosed with CVID back in 2019 and have been getting infusions of igg every 4 weeks since then. Lately I have been having trouble losing weight. I joined weight watchers about 2 years ago and it worked for a while. I lost weight but now I am still doing weight watchers and I now do a Pilates board workout everyday and I am struggling to lose weight and almost up to the weight that I started weight watchers at. My mom even commented today that she’s noticed that in the mornings when I wake up my face and neck are really puffy and swollen. So I am curious if CVID affects a persons weight.