uh who stopped it just because you got better?
i would think just because you do infusions and you get better and a doctor stops just because you are doing better, he doesnt know what he is doing,

its the infusions that are making you better and by stopping them then thatll stop you from feeling better.

I have never heard of a case of CVID going into remission. It can be treated with immunoglobulin therapy, but not cured by it.

After several months on IVIG your body could once again fight off infection and you would start feeling much better. But, in order to maintain your new borrowed immune system, you must continue with regular infusions of immunoglobulins or you will become very vulnerable to infections again.

Immunoglobulin therapy is a lifelong treatment for a CVID patient. If your hypogammaglobulinemia was caused by something other than CVID it could be different for you. Do you have a definite diagnosis of CVID?

You felt so sick to begin with because you couldn't fight off infection. Once you begin treatment again you will start to feel better again. You won't be an invalid, you will be able to go back to doing the things you love. The treatment can be a pain in the neck, but for me, it gave me back my life.

It sounds like you've got a great support system in your hubby. That is almost as important as the IVIG! Give him a hug!

Best wishes
TinaMcg

First of all, welcome to our board. You have found a great site with LOTS of people who have been dealing with the in's and out's of this disease. Second - BOTH of the previous posts are spot on.

I have read a LOT of articles and talked to a lot of people and saw some really great docs and I have never heard of CVID going into remission UNLESS it's caused by something else, say a medication.

To get a definitive diagnosis of CVID you need to make sure the doc does the pneumo test - meaning you get the pneumonia vaccine and wait like 3 weeks and check your titers - if you have no antibodies then thats the "for sure" you have cvid diagnosis.

I would suggest you contact the IDF (www.primaryimmune.org) and get a list of doctors who treat PIDD in your area. Most allergist/immunologist don't have a clue and if you have CVID and your doc stopped treatment, that is a huge problem - he put your life at risk. The docs that they will refer you too treat a very large population of patients and have great experience. Keep in mind you may have to do some travelling - most of us do. You can always find one far away that will oversee a local doc - this is what I do. Also be your own best advocate, know your levels, your IgG choices, how often you should get it and speak up to your doctors. If you cannot take your husband. We MUST be our own best advocates.

Don't give up hope. I was so sick before and IVIG (once I got the kinks straightened out) was my miracle drug. I RARELY get sick anymore - work full time - am a single mom to a 7 year old and I am almost 40.

Lastly - feel free to ask us any questions, no question is silly or can be asked too many times :)

CVID is a deficiency or a disorder, not a disease. It does not go into remission, and as others here have stated, you only get better as long as your IgG levels are good.

If indeed you have CVID, and your immunologist discontinued your IVIG, find another doctor who knows his business.

You will get better as long as you stick with the infusions. Good luck.

I believe it is a disease as PIDD stands for Primary Immune Deficiency Disease.

Hey Thank you everyone for your great advise! I do believe they diagnosed we correctly with CVID. My immunologist said I also had T-cell dysfunction. I had no health insurance. He said my IgG was so low he could get companies to donate IVIG because they would want to see if their product would effect me in a positive way. This is a long story but turned into a disaster. After years of IVIG I wasn't getting better and the doctor gave up on me and said he couldn't help me anymore although I had gotten Medicare and had a supplemental insurance. I had allergic reactions to a few infusions and he refused to treat me and I kinda went off the deep end and became very self destructive. That is the past I am hope my new doctor giving IVIG will communicate accurately with me. I don't know why this one doctor, he was a neurologist told me my hypogammaglobulinemia would go into remission then come back. I do know that when I would go into the hospital few doctors knew much at all about CVID. I am encouraged by your comments. Thank you

Many if not most doctors have never had a patient with CVID, so they are trying to figure it out as they go along just like we are. Go to the IDF link that Kelli1b lists and get an immunologist recommendation from them. Things will be a bit less overwhelming when you've got a doc that understands what you are dealing with.

I'm sorry it's been such a rough road for you so far, but hopefully things are looking up.

hugs and best wishes

TingMcG

CVID means lifelong infusions. IVIG I found too much with a full time job and single mum of three. Ive been on SCIG now for a few months, doing it at home on my own weekly. A pain in the bum, but I feel well and this is life now.

Good luck! Hope you find a doctor. My doctor had to read up on this and we are doing this together.There are good ones out there!

Here's my favorite analogy; If you chop off your arm, it's gone. Do you think it will grow back?

That is CVID. You can treat it with IVIG to help replace what's missing which is good of course. But, if you stop infusions, it will just return to the same old thing. Eventually you will be walking around without an arm.

I was diagnosed with hypogammaglobulinemia /CVID over four years ago. After going into Septic Shock, I was in the hospital for 22 days and then rehab for 18 days. My igg level dropped to 289. I have been getting IVIG infusions since being diagnosed. After getting my COVID vaccine, my levels have remained in the 600-700 range. Does anyone know if this is temporary or if the vaccine has altered something in my immune system?

I'm not even sure the two are related.

Have you talked to your immunologist or the physician that prescribes your IVIG? That would be the first person I would call.