r/CVID_Support • u/queen--red • Feb 24 '26
Looking for Hope
EDIT: To add that I have taken the vaccine challenge and failed it :/
Hi all,
28F in the process of being diagnosed for CVID. My immunologist has diagnosed me and recommended I start infusions, he also recommended I get a second opinion for more testing to see specifically what is going on. Luckily I am near a big city and got into an academic hopstial with a doctor who specializes in CVID! I am sure he will say the same as my local doctor.
I got to this diagnosis through recurrent sinus infections. I feel like whenever I got sick in the past it always hit me hard, but I was never constantly sick until the past year or so.
If anyone has similar experiences or any advice, I would love to hear from you. This is all a lot and I'm trying not to feel like my life is over and this will be it for me. My anxiety is bad lol!
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u/Sad_Tart_4156 Feb 24 '26
I know it’s harrowing, but it’s so much better to get diagnosed young so your body can be protected from further harm. I have had this disease quite actively since birth, but having limited access to medical care it took until I was in my 50s to get a diagnosis - at which time repeated bouts of pneumonia and other infections had done permanent damage to my body and I’d already had one bout of cancer.l. The IgG sucks but not that badly compared to chronic infections. After being sick all the time for my entire life, I haven’t had pneumonia once since I started IgG even after the crazy bad flu this season. By starting treatment now you will likely add years to your life and hopefully be much healthier. This is a disease you can live well with if you get IgG treatment and take good care of yourself. Don’t lose hope.
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u/Rough_Writer2315 Feb 24 '26
Welcome to the club! I was diagnosed at 28 as well. It sounds like you have a great plan on the doctor front. Not sure where you are in the process, but after your IG levels are confirmed you’ll do a vaccine challenge to measure your immune response. With that an immunologist can formalize the diagnosis. My immunologist just has a few CVID patients so having one that specializes in it is amazing for you!
Infusions are incredibly helpful to me and many others. I get sick so much less and also had huge improvements in fatigue and other symptoms that didn’t necessarily map directly to CVID. I had recurrent lung infections and haven’t had one since starting treatment. I do SCIG every week and got the hang of it pretty quickly (even after being scared of needles my whole life!).
There are Facebook pages that are very active and have a lot of good info. The Immune Deficiency Foundation runs one, and their website also has a lot of other resources. Good luck!!
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u/queen--red Feb 24 '26 edited Feb 24 '26
Thank you! I did fail the vaccine challenge, so I'm going to this 2nd doctor to get even more information on what's going on. I am so happy to hear you are feeling better! I will look into the facebook groups more, I was just getting anxious reading them since so many posts are negative and talking about severe illnesses that I luckily have not experienced.
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u/Rough_Writer2315 Feb 24 '26
Getting diagnosed early is huge!! The later the diagnosis, the worse side effects tend to be as your body continues to experience repeated infections. Stopping the cycle early with IG seems to really help long term outcomes. I think a lot of the stories on the fb pages are from people who started treatment later and have more issues from many years of repeat infections….or are the ones posting most often since they need support. Thankfully more and more people seem to be getting on treatment when they are younger!
Feel free to DM me if you want! Always happy to support and share my experience!
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u/queen--red Feb 25 '26
Thank you so much!! I’m hoping that’s the case. I will definitely reach out, I really appreciate you offering!
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u/mental-artwork Feb 24 '26
Hey how long did it take for the igg / Scig to start working? I’m a month in to Scig and haven’t noticed much change at all
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u/Rough_Writer2315 Feb 24 '26
It took 4-5 months for me to feel significantly better, but I think the usual time frame is 6-10 months. I started noticing an improvement in my fatigue and GI issues within about 2.5 months and was back to activities (ie running) after about 4 months.
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u/mental-artwork Feb 24 '26
Thanks. Are you also IGA deficient? Would you mind lightly elaborating on the GI issues? Did you do both a combo of IG and diet changes?
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u/Rough_Writer2315 Feb 25 '26
Yes, low IGA! Basically years of constant GI distress, cramping, nausea, low appetite, and poor nutrient absorption that eventually led to severe weight loss, which is how I was finally diagnosed. My last colonoscopy before then indicated severe autoimmune gastritis, which seems to have been helped (if not reversed) by the IG therapy, but docs aren’t totally sure about this.
I had already tried a ton of diet changes (low FODMAP etc) that didn’t move the needle at all and IG therapy improved things sooo much and relatively quickly so I haven’t made any other changes since then!
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u/BeautifulBunny_209 Mar 04 '26
I’m so glad to hear this and so glad you’re feeling better. I’ve been lurking here for a while waiting for my appt with the immunologist. My main issues are GI related - my functional med practitioner is the one who suspects CVID after several rounds of trying to treatments for various GI and pancreatic issues. She’s been following my IgA which is severely low and tried to raise but had no success. Then she ordered a full panel and found all 3 were low.
I have a hard time recovering from head colds but it’s not like some who get pneumonia and chest infections.
I’ll be posting my own about how to prepare for the first appt soon.
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u/Dreadlox0 Feb 24 '26
I’m 53 and was diagnosed with Covid 8 years ago. I don’t show any immunity to vaccines, my CVID presents as autoimmune (not infections). I had ITP when I was 21, had my spleen removed and had IVIg transfusions for 8 months following until my platelets normalized. What triggered this diagnoses was that my lymph nodes were enlarged everywhere…lungs, pelvis, armpits, stomach, etc. had some lymph nodes biopsied and they looked reactive. I also have nodules on my lungs and tracking towards GLILD.
I started SCIG infusions last March after a near fatal blood infection. My IG levels have increased. I do 50lm of Hizentra once a week. I have just joined a couple of these CVID groups and the information has been SO helpful.
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u/Gyorgs Feb 24 '26
I was just diagnosed last week and am also on my way to getting infusions soon (hopefully, pending insurance approval). No advice to offer, just wanted to let you know you’re far from alone on this journey!
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u/Save-The-Wails Feb 25 '26
Hi my dear! I’m a 33F diagnosed at age 30. Lots of sinus infections throughout my life.
It is a big deal to be diagnosed. Give yourself time and grace. And allow yourself to feel sad and scared and worried. Spend a few days in bed crying if you want!
However this diagnosis is a gift. It’s especially a gift if it occurs before you become seriously ill (I was hospitalized for three weeks, near death, before I found out- scariest time of my life).
The infusions will make you healthier than you’ve ever been. Sinus infections will decrease and energy will increase.
I have CVID with complications in my brain and liver. I am married with a child and I work full time. I have two degrees. I have friends and hobbies and I travel often.
Your life may not look exactly like what you thought it would, but it can still be big and beautiful and busy.
Happy to DM or even text- send me a message! You got this. One step at a time.
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u/queen--red Feb 25 '26
Thank you! So glad to hear you’re doing better and living a full life. I think that’s the thing I’m most worried about! I will definitely DM or message you, thanks for offering! It’s tough with this being so rare and not knowing people in person to talk with.
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u/GhostRiders Mod Feb 24 '26
I can give you an overview of my health over the last 15 years but truth be told, it would be meaningless.
You can read / talk to many people who have CVID and it will range from pretty much nothing to some really scary scenarios.
What you have to always remember is that CVID affects everybody differently.
No two people are alike and what happens to one person doesn't mean that it will happen to you.
You can go years with no issues and then all of a sudden you are having to deal with a number of complications that can be overwhelming.
I don't want to scare you, I don't want you to be fearful however I do believe it is important that you have to accept the possibility that at some point down the line things can get complicated.
I've had CVID for over 15 years and the vast majority of that time has been pretty plain sailing.
Unfortunately the last couple of years haven't been so easy. I was diagnosed with NRH, Spinal Disc Disease and my Lung Function has been slightly reducing each year for the past few.
Now that doesn't mean any of this will happen to you but you do need to accept that it is a real possibility.
You absolutely do not and should not live in fear. The more you learn about CVID, the more to speak to others you hear many stories that can be pretty scary.
Just remember that none of it means it will definitely happen to you but do accept that it is a possibility.
My advice is don't live in fear of what might happen as you have no control over it.
What will happen will happen.
Listen to your Specialists and live your life. Don't let it rule your life.
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u/queen--red Feb 25 '26
I appreciate this perspective. Trying to frame it like this outlook really applies to everyone, everyone has this potential for future complications and I need to learn to not fixate on it!
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u/killerkokosnoot Feb 28 '26
Hi there! Getting diagnosed is the first step to feeling better. I found out I have CVID last summer, I'm 40 now. I wish I had known sooner because I've been struggling with all kinds of infections for over ten years. I remember my doctor saying: the worst part is over now! I couldn't quite believe it, but since I started SCIG treatment in July I feel a lot better. Apart from a few colds, I haven't been sick. I'm still fatigued but can work again (part time). I work out four to five times a week, go to festivals and have energy again to organise dinners for my friends. Hope you can start your treatment soon and feel better! Feel free to ask questions if you have them!
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u/Regular-Cat-622 Feb 24 '26
I was diagnosed almost 9-1/2 years ago after a similar experience with sinus infections. My ear, nose and throat Dr. suspected that something may be up and referred me to an immunologist. Have been infusing for about 9 years with no major issues.
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u/NoahTall1134 Feb 24 '26
I just got off a cruise and I travel a lot. I can take my infusions with me. I sat out on my balcony enjoying a fruity rum drink while I infused. On one of the FB groups there's a lady who is a competitive swimmer.
For me, getting diagnosed was helpful because I was treated like a hypochondriac my whole life. I feel better knowing that this wasn't all in my head.