Guest guest Posted November 26, 2001 Report Share Posted November 26, 2001 IgG, IgA and/or IgM deficiency with poor antibody response. That's the textbook one. But the word variable means just that. There are several variations on the term. Ursula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2001 Report Share Posted November 26, 2001 IgG, IgA and/or IgM deficiency with poor antibody response. That's the textbook one. But the word variable means just that. There are several variations on the term. Ursula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2008 Report Share Posted October 1, 2008 In being very exact with definitions, a CLL patient cannot be diagnosed with Common Variable Immunodeficiency. The hypogammaglobulinemia that is seen in CLL is part of the CLL. CVID is a distinct entity that typically presents in the late teens to early 20s and is most likely the result of a defect in T cell function. The hypogammaglobulinemia in CLL might also be the result of a T cell defect, but it is not CVID. It is better termed a secondary hypogammaglobulinemia. Rick Furman, MD > > I would like to hear from other CLL patients who have > been diagnosed with Common Variable Immune Deficiency > (CVID). > > Comments from Dr. Furman would also be appreciated. > > > > In His grip, > > Stacie > Current Age 44; CLL diagnosed at age 33 in 1997 > Mutated, CD38-, ZAP- > > Multiple Anaphylactic Drug Reactions-Desensitization now required for all drugs > Leukapheresis 1999-2001 to lower WBC levels of over 300,000 > Fludarabine + Rituxan (5 days + 1 day) May 2002; > Fludarabine (5 days) Sept. 2003 > Fludarabine + Rituxan (4 days + 1 day) April 2004; > RBC transfusions > 98% marrow involvement since 1999 > Rituxan-4 Weekly Infusions - October 1- October 23, 2004 > Singulair-Vitamin D-Green Tea Extract-And Other Supplements Since October 2004 in addition to acupuncture and Chinese Massage > 2007 Monthly IVIG begins due to being severely immunocompromised > (Low neutrophils, Low IgG, IgA, and IgM as well as depleted T-Cells) > > " For by Me your days will be multiplied and years added unto your life. " - Proverbs 9:11 > > My faith and love of God: My source of hope, life, and healing. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 Full time employment for him with decent benefits. Is he a full time college student? Ursula mom to Macey (16, CVID) wife to Les (CVID) On Jan 20, 2012, at 9:33 AM, " Molly " <sds44001@...> wrote: > Good morning- > I have been on the sidelines reading posts for quite some time. I don't think I've ever posted but now I'm hoping someone can help me > > My son is 18 and was diagnosed with PID when he was 6. He received IVIG every 3 weeks until he was around 10 when he was 'trialed' off but failed. He was put back on IVIG until 3/2010 when we decided to 'trial' him off again. He received pre and post pneumococcal titers about 4 months after stopping IVIG and mounted a slight response and his IGG was around 650. He was doing okay until October 2011 when he started having sinus infections. His IGG and titers were assessed again and his IGG was 538 and the pneumococcal hadn't changed. From October 2011 to January 2012 he has had 4 sinus infections. We re-assessed his IGG and titers. His IGG is now 415 and his pneumococcal titers have dropped... > > With that being said, his immunologist has changed is diagnoses from PID to CVID. > > What is the difference betweent he two? > And, right now he is covered through BCMH to pay for this infusions which will start soon. What are my options for payment when he reaches the age of 21 when the insurance doesn't pay for it? > > Thank you so much for ANY help > > I am BEYOND upset that the infusions have to restart; he is also very upset... > > If you would prefer to contact me privately, my email is sds44001@.... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 You are right April, our immunologist felt his numbers were okay and he didn't have infections until WELL after being off IVIG. He wasn't started on IVIG just on the diagnosis of PID. When he was around 5, he had 5 pneumonias within 1 1/2 years...he was a sick little boy. I don't know how to handle the diagnoses with him. He is really upset. It was HIS choice to start on the IVIG in October but he said NO. He wanted to wait and see. But when we saw the doc this week, and he was made aware of his IGG level and his chances of a bad infection, he decided to go back on the. He is really sad though. He does get his IVIG at home; it's the way to go if you can. His immunologist has me scared because she told us that he is at greater risk of cancer and autoimmune troubles. Those scare me to death. I'm really glad I found this support group. I've really never needed it until now. Our daughter was on IVIG for 2 1/2 years but thankfully outgrew her deficiency. Thank you all for the information you have offered. From: n2katz2003@... Date: Fri, 20 Jan 2012 15:44:19 +0000 Subject: Re: CVID Under the new insurance stuff you can keep your children on your insurance until the age of 26. They did this in the hopes of helping those young adults keep insurance until they are able to find a good job with benefits. So that should not be a huge concern yet. CVID (Common Variable Immunodeficiency Disorder) is a type of PID (Primary Immunodeficiency Disorder). I am surprised you were able to get insurance coverage for infusions with just the diagnosis of PID, but all insurances are different. As for the previous person asking why he was taken off infusions with those Ig numbers...everybody functions at different levels. My son's numbers are not near 1000 even on infusions, but his infections have gone down so much that the Immunologist feels good with his current levels. Some people need to be closer to 1200+ to have less infections. Most Immunologists treat the patient's symptoms so if at those numbers her son was pretty much infection-free then they probably felt it was ok to trial off of the infusions. All doctors and patients are so different which makes it so hard to compare treatments and numbers. > > Good morning- > I have been on the sidelines reading posts for quite some time. I don't think I've ever posted but now I'm hoping someone can help me > > My son is 18 and was diagnosed with PID when he was 6. He received IVIG every 3 weeks until he was around 10 when he was 'trialed' off but failed. He was put back on IVIG until 3/2010 when we decided to 'trial' him off again. He received pre and post pneumococcal titers about 4 months after stopping IVIG and mounted a slight response and his IGG was around 650. He was doing okay until October 2011 when he started having sinus infections. His IGG and titers were assessed again and his IGG was 538 and the pneumococcal hadn't changed. From October 2011 to January 2012 he has had 4 sinus infections. We re-assessed his IGG and titers. His IGG is now 415 and his pneumococcal titers have dropped... > > With that being said, his immunologist has changed is diagnoses from PID to CVID. > > What is the difference betweent he two? > And, right now he is covered through BCMH to pay for this infusions which will start soon. What are my options for payment when he reaches the age of 21 when the insurance doesn't pay for it? > > Thank you so much for ANY help > > I am BEYOND upset that the infusions have to restart; he is also very upset... > > If you would prefer to contact me privately, my email is sds44001@... > > > Quote Link to comment Share on other sites More sharing options...
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