Hi everybody,
my name is Beatrice, I am 24 year old and I was diagnosed CVID one year ago. I live in Italy near Milano.
I receive my IVIG every 3-4 weeks, depending on my levels.
In june my enlarged spleen was removed because my doctor suspected a lymphoma, but fortunatly it was an hyperplasia. But now I'm without spleen. Usually the IGIV treatment doesn't have any effect on me but I'm a little tired. My problem is that during the year I need to get antibiotics for flu or throat pain about 3/4 times. It means the treatment doesn't work? Is there someone else in my conditions? Or maybe with an enlarged spleen?
I'm very thankful with anyone will write to me. I feel less alone nw that I have discovered this forum...

Bea

Hello,

My name is Laura and I am 35. I was just diagnosed in August and had my first IVIG yesterday. I had no side effects and feel pretty good. I have been told that I will still get sick just like everyone else. I just won't be as sick for as long as I was. I should get over it with antibiotics just like a normal person because of the IVIG. Before IVIG I would get a cold that would turn into upper respitory infections or pneumonia and it would take a month of antibiotics to get over it. Sometimes even longer. I have been told that the IVIG is supposed to help your body to fight things not eliminate them. I don't think that your IVIG if not working. If you only get sick 3/4 times a year I think that that is very good. I have been sick since January of 2005 and hope to start feeling better. Also, my spleen is also slightly enlarged, but I did some reasearch and one of the symptoms of CVID is an enlarged spleen. I am shocked that yours was removed. My doctor is not even concerned. Hope this helps.

Laura from El Paso, Texas, USA

Hi Laura,
thanks for information you gave me.
Me too I have read about the enlarged spleen of CVID patients, but my spleen was very enlarged (twice as normal) and it 'ate' all the white blood cells, so my doctor though more safetly to remove it. I hope I can cope with this ( he said I will be ok also without).
I hope he was honest...

Let me know if your treatment will work good.

Ciao
Beatrice

Beatrice,

Chronic sicknessis a common problem iwth CVID. I take antibiotics every day in low doses to maintain a level in my bloodstream. You use the IVIG over time, but that doesn' mean it is not working. Have your lvels checked before your next infuion and they should be more than 300.

Hello Beatrice,
I come from Germany and I am suffering from CVID. I am 50 years old and was diagnosed 11 years ago. My treatment is subcutaneous immunoglobulin since about 7 years now. I still have infections because I am suffering from bronchiectasies.

I had a very enlarged spleen like you as well as enlarged lymph nodes all over the body.
My spleen made great health problems, low thrombocytes, leucos and I had pain during walking or sitting. I lost weight, because I could not eat enough.
Of course I asked doctors whether it would be good to remove the spleen. All doctors meant it would be better if the spleen could stay but finally the spleen was so large that there was no other possibility than to remove it. I am without spleen since 1 1/2 years now and I am still on antibiotics to avoid infections. Do you have permanent antibiotics as well? I am not sure whether I will tolerate this treatment all the time, I already have some problems from it.
Please let me know how you are feeling now!

Greetings from Germany,
Eva