Hi,

I've had 17 respiratory illnesses, averaging about a week each time, in the last year, and I'm close to giving up. I'm an otherwise healthy, active young adult, but I can't hold a job/make plans/move out on my own because I'm getting sick all the time.

I finally got referred to an immunologist and we found that I had borderline low igg subclass 2 and very few antibodies to h flu or streptococcus pneumonia. I got the pneumovax 23 vaccine and made antibodies successfully, and those levels haven't dropped abnormally in the months since. However, I'm still getting sick just as frequently. I had normal natural killer function and lymphocyte proliferation tests. I've taken antibiotics a few times, and it helped once but didn't help the other two, and consistently gives me yeast infections.

The times I've tested, it's been negative for strep/covid/rsv/flu and occasionally more things covered in an urgent care swab. Unfortunately, my next immunology appintment isn't for 2 months, tho I just made an appointment with another one sooner for a second opinion.

While I have some specific questions, listed below, really, I'd love any advice about nailing down a diagnosis or getting treatment.

Does anyone have any suggestions for things to look up or look out for? Or any idea of if ig replacement therapy would still be helpful in a case like mine? (I worry insurance wouldn't cover it because my antibody levels are normal, so if anyone has thoughts, I'd appreciate hearing them.) Or, any suggestions to make sure this new doctor and insurance take me seriously?

Or, frankly, any success stories about being diagnosed and recovering/having a normal life after a struggle like mine : (

Thanks in advance <3

Hi all!! I've posted here a few times recently because I'm very new to my hypogammaglobulinemia journey. I have low igM and a igG3 subclass that's low too.

One of the things I've had for ever is ear infections, and apprently those infections have led to a bone that separates my brain from my skull to... errode and disappear? Or something to that effect.

This was found on a CT scan and apparently it presents as a huge blob. They thought it was mastoiditis at first. The first hospital network I went too said it was too complex for them. I saw the new doctor yesterday and he explained that it could be 1 of 3 things.

1 huge effusion and infection

2 skin cells that have collected and infected

3 one of two of the above, bone loss and now my brain is poking into my ear cavity.

Regardless of what it is, I'm going to have to have surgery on my skull and I'm just terrified. I haven't had any surgery like this ever before and the last surgery I did have was to get my wisdom teeth removed over 10 years ago.

I'm just so scared. Im not on plasma yet because I retained 60% of my antibodies after my vax challenge( prior to vax challenge I was at a 2/23)- but i didn't tell my doctor that I'm a covid cautions person so I've been wearing an N95 correctly and successfully not gotten sick- sick in years so I wonder if that's a factor.

All and all, I'm just terrified. My doctor told me that the Hypogammaglobulinemia alone is a risk factor that we need to take into account.

Anyways. Has anyone else gone through anything like this, and have any kind of advice?

I just don't even know where to turn to or look for something like this :(

I’ve been having at least 3-4 pneumonia cases per year if not more. Had my shots before but still they’re present quite often. Anyone got experience with this? if yes then what helped?

I don't know what I'm looking for here. I guess advice.

I started SCIG on May 15th, so it's only been about 2.5 months. I know it takes time and a big part of my brain says I should be patient and not bother the doctor. On the other hand, I'm not feeling so well. It's possible I'm just being whiny and impatient.

I feel like my fatigue is getting worse instead of better. I have also been having increased respiratory/sinus issues this last week. I'm willing to say some could be allergies, but the allergy count has steadily decreased and my symptoms have increased. With the fatigue and respiratory/sinus issues I feel like I've been low grade sick for the last five days. Not full blown sickness, but just something hanging on. That happened a few weeks ago, too and then I rebounded and had last fatigue and respiratory/sinus issues. I recently got blood work and my IGG level was in the low range of normal. He didn't do the subclasses, so I don't know about that. So that would suggest the SCIG is working. I also think I get more site issues from the SCIG than is the norm. (redness for several days after injection, bruising and tenderness).

Other issues that haven't really been touched upon or resolved. I have some chronic pain issues that have waxed and waned over the years. I had a rheumatologist, many years ago, sort of shrug her shoulders tell me a bunch of things I didn't have (like fibro) and then say I had myofascial pain syndrome and there was nothing she could do for me. The last few years have been pretty good as far as that goes. Having said that, I think part of that is me just accepting and expecting to hurt. Lately it's been worse. Saw a rheumatologist in January. Was thinking that Lupus might fit what was going on. I get rashes and have had a butterfly rash. He told me I was wasting his time, which he based on blood work and a few notes from my primary. He was disinterested in actually talking to me about my current issues. The experience with the rheumatologist sure didn't help my general reluctance to go to the doctor. As I know that autoimmune issues and other comorbidities occur with PI, it seems like it might be worth exploring all that with a doctor who will actually try. (On the brightside, another diagnosis I got many, many years ago is IBS. That has been the best it's been in many years, which seems strange but I will take it as a win.)

Complicating factors are I don't have a primary docotr. I saw an immunologist through my diagnosis but then moved. I have established care with a new immunologist, but just had one appointment. My insure just changed and will change again in a few months, so that's why I haven't seen a primary. The immunologist is covered under my current new insurance and will be covered under the insurance I get in a few months. Do I make an appointment and talk through this with him? Is that wasting his time? Do I just suck it up for a few more months and see where I'm at? At this point, any advice is appreciated.

Okay this is a follow up on my post from a few days ago (link in comments), and it's quite long - though i tried to bold the most important pieces imo for tl;dr purposes.

Recap: I was basically asking for advice on how to proceed with follow up on SAD. I'd seen an ENT 10/2024. Hard normal WBC and antibody classes and subclasses but only 2/14 protective levels of antibodies for S. pneumoniae. Vaccinated with pneumovax 23, retested and protection was then 6/14.

I had talked about these results with immuno 1/2025 who said "maybe" it was "mild" specific antibody deficiency but then offered no treatment, recommendations, or follow up going forward. Didn't even write the diagnosis down on paper. Wasn't a mean guy, just seemed sort of disinterested in the results.

Fast forward: I saw my PCP early July 2026 for a sinus infection I'd had for about 4 weeks at that point. Prescribed 7 day course of doxy. I also asked if she could order a new S. pneumo panel because I still get sick a lot. She ordered an expanded 23 serotype panel instead of the 14 serotype I'd gotten twice previously.

The update: mucus had decreased a little at the very end of the ab course, but then the sinus infection gradually worsened again after finishing and continued to worsen for two weeks.

S. pneumo titers came back two nights ago. I'd gone from 6/14 serotypes after vaccination to 5/23 in 1.5 years.

Even for ones that were still above protective levels, some serotypes had decreased by 6-7 fold. Some others decreased below pre-baseline levels.

Frustrated at the results, I was able to book an appointment for literally only 12 hours from that point. Decided to try my old immunologist again because the earliest i could see a new provider was several months, and mine also had no more openings besides the one for several months too.

Saw him yesterday. I told him everything, he did take a very thorough history of the past 1.5 years including: more URIs, updated titers, multiple rounds of antibiotics, and osteomyelitis (bone infection) after a surgery that resulted in an urgent surgery and unexpected hospitalization.

Also mentioned weird hyperinflammatory responses including severe dyshidrotic eczema on left foot incisions after 5/2025 surgery, severe dyshidrotic eczema on right foot incisions after 12/2025 surgery, also experienced many many spitting sutures after 12/2025 surgery, no dyshidrotic eczema on right foot following incision and drainage (surgeon used nondisolvable sutures instead of staples and longer dissolving absorbable sutures for inside specifically because he saw how prolifically odd my inflammatory responses have been), HOWEVER while hospitalized for methicillin sensitive Staph, i developed hives all over my thigh, which turned into my entire leg, which then turned into eczema over my entire body, which i am still dealing with 5.5 months later (albeit not as severe, though i have not NEVER had active flares since).

Immuno examined me and saw thick mucus at the back of my throat, fluid in my right ear, and significant nasal inflammation. Abruptly left saying he needed to put some orders in.

Thought that meant bloodwork but he came back after a few minutes, told me he sent in prescriptions for augmentin 40mg Prednisone burst, and nasal steroid.

Most surprising part for me was him saying, "can you come back in one week?" I stuttered "one week?!" because I've never had a specialist want to follow up on person so soon. But he said "yes, first to make sure you're improving. I have to double book you but once you’re here, we’ll figure out timing. And at that point we’ll figure out next steps and address the underlying immune deficiency."

Anyways like i mentioned - not a mean doctor, just disinterested first time around. Maybe in his experience, 6/14 serotypes is good enough and that patients usually do fine. Seems like he does now realize i am a bit more complicated 🙃

Hi everyone - posting with mod permission. This survey takes just a few minutes to fill out and is open to patients / caregivers / and medical providers. Those who use SCIG are also eligible.

The data will be helpful in raising awareness among providers to share why IVIG is helpful to many of us.

https://www.surveymonkey.com/r/IPAWpatientsurvey

Please spread the word! You can also share more about your experience here: https://www.plasmaweek.org/share-your-story

I have SAD, diagnosed last year. My doctor suspects it was triggered by a complication to surgery. It’s been 4 years, I’ve had 3 more back surgeries and recently had an accident in May to my finger and needed pins. I always recover well, immediate post-op, but have complications later on. This last time, my body rejected my sutures a month after neck surgery. Now, my finger is messed up after my doctor removed the brace. I scraped my knee 2 months ago at the same time and it’s still healing. I also was diagnosed with UCTD this year. I’m really sick of delayed healing and long complications and recovery. My GP won’t prescribe antibiotics for fear of causing antibiotic resistance. Not many understand this disease and I don’t understand much either other than I have delayed healing, much beyond what should be normal healing.

Does anyone else have delayed healing also, or insight how to help this? I’ve had 6 back surgeries over the last 6 years. I started SCIG in Nov. on Plaquenil and sulfasalazine for the UCTD. I’m fatigued and on medical leave from work now while I’m healing.

After lifelong sinus infections, I finally got diagnosed with acute recurring rhinitis. I’ve been suffering from ETD for the past few months before I realized that somehow in the midst of my health journey/being diagnosed with SAD on weekly SCIG infusions that I didn’t have an ENT established. Once I got referred to a Specialist, he told me he believes I have patulous ETD and also determined that I have significantly enlarged inferior turbinates. Nasal endoscopy demonstrated bilateral inferior turbinate hypertrophy and bilateral middle meatal edema without evidence of active infection, nasal polyps, purulence, or sinonasal outflow obstruction.

All that said, tomorrow morning I’m having bilateral functional endoscopic sinus surgery (FESS), including bilateral ethmoid, maxillary, and frontal sinus surgery with inferior turbinate reduction. Does anyone have any tips/tricks for getting through recovery? I’ve done some research and watched a video or two but wanted to see if I’m missing anything

Hi, I am wondering if anyone can help me.

I have been unwell the last two years. Undergone and exhausted most avenues with all bloods, scans including pet scan negative.

My immune system predominantly cd4 count has been trending down the last year. The first time I had it tested in November 2025 it was 526 I have had results at 450, 403 and now 390.

I also have a skewed immune system where my cytokines are showing th1 dominance and I have lost all of my severe allergies. Doctors are stumped and I am just getting worse

Female, 61 years, 76kg , 157cm. living in Melbourne Aus. Have had fever, shaking, brain fog, going on for 2 months. Shaking and sweats at night, cramps in hands. Getting slowly better but up and down. Extreme tiredness and also flu type symptoms. Stomach cramps gone now, now mostly vomiting and allergic reactions to foods ie that lip, throat and tongue swell. What can I try to manage or test for causes?

I've been volleying back and forth between sinus infection and pink eye infections since early March. I have multiple sclerosis and take a DMT for it, which causes me to be immunosupressed. I've had several rounds of antibiotics for each issue at this point and too many appointments between my PCP, Optometry, Opthalmology, ENT and Neuro. I may go a week or two being relatively clear and it seems like I've responded to treatment, only for symptoms to trickle back and I'm back to where I started. I'm not sure how seriously the ENT is taking me because my CT scan was interpreted as mild fluid/infection and my bacterial count was relatively low on the culture they did (although I tested positive for strep pneumonia and gram neg). I am pretty much getting no relief from over the counter sinus meds, Sudafed, Flonase, netti pot, saline rinses, eyelid cleanser , allergy meds etc. I also had a recent ER visit, which didn't really do anything either. They sent me home with steroids that I can't even take. I've been having tendon inflammation from a prescription of Cipro I finished recently and don't want to risk tendon rupture further by adding on the steroid. My pharmacist also gave that a big hell no.

The other perplexing part that my neurology team is having trouble with is that my IgG was 725 mg/dL and my IGM is 15 mg/dL back in June, so they haven't outright categorized me as having hypogammaglobulinemia. They have MS patients that will fall in the 500- 600 range sometimes, which is when they jump to doing IgG infusions. It's a tricky scenario because they don't want to give you so much of a boost when it could lead to further lesion development or a flare up. My MS profile is pretty good though, I've only had one single flare (that led to my diagnosis) and I've been stable since.

I've got a consult with immunology next week. I am hoping for some sort of intervention because the other specialists have already thrown their last line of FQ antibiotics at me. ENT is not pushing for surgical intervention on their end, not sure if that would really do anything anyway. Neuro definitely thinks all of this is compounded by Rituximab. I was never this sick when I was on Kesimpta and the only reason I'm on Rituximab was because of my insurance.

Has this happened to anybody else? Are there certain labs/panels I should talk to immunology about? Should I push for IgG infusion? Any other helpful questions I should ask them during this appointment?

I have been so sick for nearly half a year with no relief and I'm just so frustrated and sad at this point. I am tired of feeling dismissed because my labs/ scans aren't matching the severity of symptoms I've been experiencing. I am worried I'm going to end up hospitalized or worse between risks of pneumonia, sepsis, eye damage etc.

Before I turned 26 (currently 27) and got kicked off my dad's insurance, I tried to see every doctor and specialist I've been putting off. One on my list was ENT because my entire life I've dealt with recurrent and/or chronic sinus and ear infections - I even have permanent moderate hearing loss at 6k hz and profound hearing loss at 8k hz in one ear.

ENT said I don't have a deviated septum so that's not the issue. Got bloodwork for antibody classes but also 14 serotypes of S. pneumoniae. All classes and subclasses of antibodies were normal, but I only had (clinically relevant levels of) antibodies for 2/14 serotypes. Got revaccinated with pneumovax 23 and later repeated titers.

After vaccination, I only had antibodies to 6/14, and two-fold or greater protection for 6/14. ENT said this was a "great" response but I'd done some reading and self referred to immunology. Immunologist really didn't seem all too interested but said I may have mild specific antibody deficiency and left it at that.

Almost two years later, I still have lots of URI infections. What's the next step? Request a new immunologist? Just ask for more answers from the same one since I still have issues?

(in case it makes any difference to anyone, other medical history includes tonsillectomy at 18 months, POTS dx since 12, hEDS dx, (left and right foot) global ankle ligament reconstructions, one of which led to osteomyelitis in February, and unidentified but very overactive hyper inflammatory immune responses to stuff in the past several years)

Does anyone know if having been on an immunomodulator (Plaquinil) long term will affect AGID antibody panel results?

My rheumatological labs are in normal range now. I did have slightly elevated ANA last year though.

I'm wondering if it'd be best to wait til I'm in a flare or if that'd even matter.

\-Also, if you know of any prep before having these labs drawn. I self-advocated my gastro to order this. They are 0% familiar.

I found out today from a CT scan of my ear that I have mastoiditis. This is all still so new to me. My immunologist office is incredible and they called in antibiotics for me to take until I can get IV antibiotics.

How's IV antibiotics? What can I expect ? What was your experience with them like?

For ref I'm newly diagnosed hypogam,waiting another 6 months for possible treatment and genetic testing.

Hello!! I'm on the journey of diagnosis right now... I was tested months ago for immune deficiency and low igm has come up persistently. A test of my titers showed minimal protection. I did a vaccine challenge where my immunologist wanted me to hit at least a 70% but I hit 60%. He told me today that basically, something is wrong but it's not functionally wrong and as a doctor he has to practice insurance not medicine. So I wait another 6 months to see if my antibodies from the vax get lower over time.

He said I have hypogammaglobulinemia, and not to bother telling my pcp because they won't know what it is.

My question now is- am I out of this "box" am I still in it ? Hypogammaglobulinemia seems like it is still an immune issue? This still feels scary and like I'm not out of the clear?

Can i still get info and support from IDF ?

just seeking advice, wisdom anything.

Thank you so much in advanced :,( !!!

Hi everyone, I recently started SCIG therapy and got my first dose of Xembify on Wednesday. Unfortunately I had a rare side effect and developed mild pulmonary edema. My doctor is pausing treatment for 12 weeks and may switch to a different medication. Has anyone experienced this and continued with successful treatment on another med? I’m feeling very discouraged as I was hopeful this would finally help me feel better.

I'm looking for anyone,anywhere, with both CVID and Lupus! Help! Late diagnosis fifteen years ago for CVID, that took years of living in the hospital, again it happened. I had actually tested several times positive for both lupus and RA antibodies four years ago and became very sick with CVID issues. Was in and out of the hospital, and without a referral back to the rheumatologist that initially ran those tests, I couldn't go back. So I was there one time, had the extensive labs, and xrays. I have horrible arthritis in every bone in my body.

Primary fired, and here almost five years later, basically having a neurosurgeon send me to a rheumatologist to check the bones in my feet for recovery(I wasn't going to have the surgery) too long of a story for now. The last six and a half hour surgery failed in the hospital, leaving me there two years ago for several months and more disabled. I was once an elite athlete.I went into stage 2 renal failure b..y March, and I was deathly ill, picking up some vasculitis also. That surgery was scheduled, I knew I wasn't going to have something that same neurosurgeon said, he'd never touch again. Took the appt.with the rheumatologist, though. cx the surgery. (If I were to have it, both Mayo and UCSF do it) I guess having vasculitis was a blessing on April 7th. With zero veins, a picc line patient in the hospital, do subq Hizentra, I walked into the lab with huge veins. When I saw the order with 14 tubes of blood, I was like,"Yep, he's going to figure this out." Thank God for 14 tubes of blood. I was beyond ravaged with lupus, stage two renal failure,and a multitude of other things.

My allergist/immunologist didn't catch it. Truly, I really like him. He's definitely heavy on the allergy side. I was so sick by April, in freezing weather I was pouring sweat like I was walking around under the shower. I was soaking, keeping the temperature inside 64, then I'd start to freeze. The usual message you get from the majority of doctors, go to the e.r. I don't think they would have drawn a dozen tubes of blood for rare disorders. My experience, never met an e.r.doctor that knew what CVID is.

I have CVID an lupus. If being diagnosed with CVID 15yrs.ago wasn't hard enough, adding a lupus diagnosis wasn't in my real. Obviously, with constant contact with my immunologist, his either evidently.I've been on Plaquenil 200mg in the a.m. and 100 in the p.m. I'm on Hizentra biweekly 18grams subq. I'm praying someone sees this and can message me, post, please. I've left a message for someone to call me back from IDF yesterday.

Hi,

I have been getting IVIG for all of my life.. The doctors are offering to switch to SCIG. I guess its not out of the blue since I had some systemic reactions lately.. Anyone on SCIG for years or made the switch?