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Discussion Starter · #1 ·
Hi Cathy,

I read in another thread that you had Lupus, APS and CVID (Common variable immunodeficiencyDisease). I was intrigued should I say as I was recently searching see if there was a connection between Lupus and CVID and couldn't find any until I read your post.

My sister developed CVID (it was called Hypogammaglobulinanemia back then) when she was pregnant for her first child. She was given plasma at that time since they did not have the synthetic gammaglobulin then. She was later given it by IV. Unfortuneately, she contacted Hep C from the plasma and died 9 years ago. She fought the CVID, but couldn't fight the Hep C. One of her sons has the disease as well, but he has only received the gammaboulin by IV which is great.

I have the blood clotting disorder and Lupus. So, I was looking for a connection to Lupus and CVID. Like I said I couldn't find any. Have you found anything? I guess you don't need to if you already have both? I was worried because I already have permanent lung damage from the blood clots and a chest tube I had 2 years ago to remove fluid from my lung. My sister had to have part of her lung removed. Because both diseases affect the immune system, I often get asked if they are related, so I would like to find out more if possible. Up until now, I thought there was none.

Thanks.

Nutty
 

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Discussion Starter · #7 ·
Thanks Cathy,

Yes, it was hard to lose my sister as we lost a brother to a car accident just a few years earlier. We are coping well, but miss them terribly. My parents (81 yo) are understandably very worried about my health now. But I plan on beating this!!!!

The articles were very informative, thank you. I was with the second article that these are two diseases are different beasts. Now, I must pay more attention to what is happening. I don't know a lot about CVID as the internet was not something I had access to when my sister was sick. So, I will learn more about it now. With SLE I tend to get the uncommon symptoms and CVID would fall into that category. It seems that SLE comes first and then CVID. Did you get a lot of infections that lead to the diagnosis? I know my sister had pnemonia for three years. They told her that she had a spot on her lung but they didn't know why. They finally sent her to a specialist who made the diagnosis. Interestingly, they treated her at the Children's Hospital because it was considered a childhood disease. (That's where she got the tainted blood which is scary. I hate to think how many kids were infected.) I don't think that is the case now?

Now I will have to research CVID. I still don't have a handle on the blood work for SLE, so I'll be busy!!

Thanks again for the information. I'm sure I'll be back with more questions as I learn more about it. I told my nephew that there appears to be an injecton now for the gammagobulin. He stills gets the IV every 3 weeks which he hates. I don't blame him.

Nutty
 
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