Discussions By Condition: Immune conditions

Cvid

Posted In: Immune conditions 21 Replies
  • Posted By: karen2
  • January 30, 2007
  • 04:22 AM

about a year ago i was diagnosed with common variable immunodeficiency. i had monthly IVIG treatments done with no change in my levels. now i do at home infusions one a week. i was wondering if anyone else has this condition?

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21 Replies:

  • Hi Karen my name is Diane and i also have cvid i had been having 3 weekly iv infusions but am training to do sub cut infusions at home but i keep reacting to the medication they think due to underlying sinusitis infection i am due to have sinus operation on the 14th feb to alleviate this i also have ITP ideopathic thrombocytic purpuera (low platelet count my dad had cvid and also my sister. I would be interested to hear more of your experiences ie what were your symptoms how you got diagnosed you might be interested to look at the primary immunodeficiency assosiation website its really helpful for people like us and there is a discussion forum you can join hope this helps Diane:)
    Diane Sistern 29 Replies
    • January 30, 2007
    • 08:44 AM
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  • Hi, I have just been told that I may have CVID, as I have low IgA and IgG levels. My IgA level has been low (and getting lower) since late last year, and IgG on the lower edge until recently when it has gone further below the normal level. I am going to see an immunologist soon about it.I have heard about that IVIG (I think thats what its called) where you get an infusion of someone else's immunoglobulins - is that right? How often do most people have to have it? Weekly sounds like quite a lot! My levels aren't completely gone and are not as low as some, but I think that if having the infusion would help, maybe I could have it...HOWEVER, I have heard that if your IgA is low, you can have a severe reaction to the infusion or something, and go into anaphylactic shock easily...what do you know about that? Can anyone help with info on CVID and/or the treatment options/duration/etc? Thanks heaps!
    kiwi88 11 Replies Flag this Response
  • Hi! Sorry it took so long for me to reply, but I don't get to the site very much. When I was diagnosed with CVID my doctor started me on monthly IVIG treatments. My levels still weren't where they should be so that's when I started the weekly sub q infusions. There is a chance of allergic reaction, but before the infusion starts I take benadryl and tylenol as the doctor ordered. I have been fortunate enough not to have an allergic reaction. The sub q infusions are done at home, so I have my own epi pen---just in case.--- It is normal to have some discomfort at the injection site(s.) My sites get red, swollen and hard. This only lasts a day or two and ice takes down the swelling. I'd be happy to talk more, you can e-mail me at sunflower21@netzero.net. Anyone else reading this that is going through it can also e-mail me. I'd love to hear from you. :) Karen
    karen2 7 Replies Flag this Response
  • Karen2, I'm not sure if anyone is still responding to this forum. It has been quite a while since the last posting. I was diagnosed with CVID about 2 weeks ago, and as I am sure most of us out there were...I have a ton of questions, and not that many answers. I was told by my doctor that if I were to need a transfusion of blood (accident or what not), that I would have to carry a medical alert card. That card would have to say something along the lines of that I have CVID and that the blood must be scrubbed of antibodies before I could receive it. If the blood was not scrubbed I could go into anaphylactic shock. Has anyone else heard of this reaction? Thanks!
    Anonymous 42,789 Replies Flag this Response
  • Blaze, I was diagnosed by an allergist, but I was told that I could get a second opinion by a Hematologist. My allergist did a blood test to took at IgG, IgA, and IgM levels. There is a normal scale for each one of those. In my case I was below normal in each of the categories. Hope that helps.
    Anonymous 42,789 Replies Flag this Response
  • I was diagnosed in 2007 with cvid. I began immune globulin infusion treatment in October 2007 and continued them until April 2008. My insurance company will no longer cover the treatments. My treatments were once a week and we did them at home. I had no adverse reactions. The treatments really helped me get my strength back. In April, my antibodies were back in the normal range. I also have COPD. I'll be glad to answer any questions I can about this. Joyce 12
    Joyce 12 3 Replies Flag this Response
  • Karen2, I was told by my doctor that if I were to need a transfusion of blood (accident or what not), that I would have to carry a medical alert card. That card would have to say something along the lines of that I have CVID and that the blood must be scrubbed of antibodies before I could receive it. If the blood was not scrubbed I could go into anaphylactic shock. Has anyone else heard of this reaction? Thanks!I was diagnosed with CVID over 30 years ago. If your physician is suggesting that blood "needs to be scrubbed of antibodies", I suggest you find a new physician. That one doesn't have any idea what he is talking about. After attending many seminars and being peer counselor for the Immune Deficiency Foundation, I've never heard such a concept.
    Anonymous 42,789 Replies Flag this Response
  • I was diagnosed with CVID over 30 years ago. If your physician is suggesting that blood "needs to be scrubbed of antibodies", I suggest you find a new physician. That one doesn't have any idea what he is talking about. After attending many seminars and being peer counselor for the Immune Deficiency Foundation, I've never heard such a concept.I agree with Mark in Cleveland. I am hoping you found another doctor. First you would need an infusion...not a transfusion. I would contact an immunologist if you haven't already.
    Anonymous 42,789 Replies
    • September 28, 2009
    • 07:01 PM
    • 0
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  • Good morning, Mark. I was diagnosed two years ago, and I am very fortunate as it took quite awhile and many doctors to get there. My current doctor is wonderful, but he is also full scheduled, travels internationally and conducts research. This has some negative affect in communication, and I have a long way to go toward being at least 70% well. Are you in a position to recommend some doctors that you may know whom I would then look into? I will travel where ever is necessary to travel to, as, at first, I visited over 10 doctors at teaching hospitals on the east coast, without obtaining a diagnosis. Thank you, sincerely, Catharine
    Catharine 4 Replies
    • January 10, 2010
    • 03:52 PM
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  • Good morning, Mark. I was diagnosed two years ago, and I am very fortunate as it took quite awhile and many doctors to get there. My current doctor is wonderful, but he is also full scheduled, travels internationally and conducts research. This has some negative affect in communication, and I have a long way to go toward being at least 70% well. Are you in a position to recommend some doctors that you may know whom I would then look into? I will travel where ever is necessary to travel to, as, at first, I visited over 10 doctors at teaching hospitals on the east coast, without obtaining a diagnosis. Thank you, sincerely, CatharineYes Catharine; here are two immunologists that I would personally recommend. Dr. Mark Stein in West Palm Beach, FL and Dr. Don Russell in Asheville, NC. I have had CVID for 18 years. Dr. Stein was involved in the original study for "Vivaglobin" ( the subcutaneous drug used today). Dr. Russell is my current doctor and is the most dedicated and caring doctor I've ever had. It took about 3 years of infusions/treatment for me to start to feel "normal" and now live a full and active life, getting sick once or twice a year. Vivaglobin (weekly infusions into the skin) is the way to go. No side effects. Keep a positive attitude; over time you will get better!Christine
    Anonymous 42,789 Replies
    • January 25, 2010
    • 00:02 PM
    • 0
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  • Dear Christine, Thank you, you have given me hopeful information. I am being infused this week, and will give you a short reply, but will follow up with you as I progress. Best, Catharine Good morning, Mark. I was diagnosed two years ago, and I am very fortunate as it took quite awhile and many doctors to get there. My current doctor is wonderful, but he is also full scheduled, travels internationally and conducts research. This has some negative affect in communication, and I have a long way to go toward being at least 70% well. Are you in a position to recommend some doctors that you may know whom I would then look into? I will travel where ever is necessary to travel to, as, at first, I visited over 10 doctors at teaching hospitals on the east coast, without obtaining a diagnosis. Thank you, sincerely, Catharine Yes Catharine; here are two immunologists that I would personally recommend. Dr. Mark Stein in West Palm Beach, FL and Dr. Don Russell in Asheville, NC. I have had CVID for 18 years. Dr. Stein was involved in the original study for "Vivaglobin" ( the subcutaneous drug used today). Dr. Russell is my current doctor and is the most dedicated and caring doctor I've ever had. It took about 3 years of infusions/treatment for me to start to feel "normal" and now live a full and active life, getting sick once or twice a year. Vivaglobin (weekly infusions into the skin) is the way to go. No side effects. Keep a positive attitude; over time you will get better! Christine
    Catharine 4 Replies
    • January 25, 2010
    • 11:34 PM
    • 0
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  • Good morning, Mark. I was diagnosed two years ago, and I am very fortunate as it took quite awhile and many doctors to get there. My current doctor is wonderful, but he is also full scheduled, travels internationally and conducts research. This has some negative affect in communication, and I have a long way to go toward being at least 70% well. Are you in a position to recommend some doctors that you may know whom I would then look into? I will travel where ever is necessary to travel to, as, at first, I visited over 10 doctors at teaching hospitals on the east coast, without obtaining a diagnosis. Thank you, sincerely, CatharineWhere do you live? Let's see if we can find an immunologist in your area
    Anonymous 42,789 Replies
    • January 26, 2010
    • 03:51 AM
    • 0
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  • Please let me know where you live. We'll try and find someone close to you. Dear Christine, Thank you, you have given me hopeful information. I am being infused this week, and will give you a short reply, but will follow up with you as I progress. Best, Catharine
    markincleveland 5 Replies
    • January 26, 2010
    • 07:00 PM
    • 0
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  • Mark, good morning and thank you. I live in Delaware. I may have written previously that I had visited Doctors at Hopkins, Jefferson, Penn, Columbia, and National Jewish before being diagnosed, despite my titer, etc. It seems that my present doctor is so much more up to date because he is in current research and also trained internationally. Close would be absolutely great, but is may also need to be secondary. Thank you, very much, Catharine
    Catharine 4 Replies
    • January 27, 2010
    • 00:16 PM
    • 0
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  • Here are some names for you. I've personally met and heard each of them speak at meetings over the years. My experience is it doesn't matter the hospital affiliation of a physician, what matters is the physician and by that I mean, not someone else his his department, a fellow or a resident. Here is a list of east coast specialists who are active in the IDF and publish regularly. Personally, I particularly like Jordan Orange at CHOPS in Philadelphia. My daught is in nursing school there and sees him. He's really bright, conscience and a nice person. R. Michael Blaese, MDNewtown, PA Charlotte Cunningham-Rundles, MD, PhD Mt. Sinai Medical Center New York, NY Howard M. Lederman MD, PhDJohns Hopkins HospitalBaltimore, MD Jordan Orange, MD, PhDChildren’s Hospital of PhiladelphiaPhiladelphia, PA Kathleen Sullivan, MD, PhDChildren’s Hospital of PhiladelphiaPhiladelphia, PA Jerry Winkelstein, MDBaltimore, MDgood luck. Let me know if I can help or if you've already seen some of these practitioners. Mark, good morning and thank you. I live in Delaware. I may have written previously that I had visited Doctors at Hopkins, Jefferson, Penn, Columbia, and National Jewish before being diagnosed, despite my titer, etc. It seems that my present doctor is so much more up to date because he is in current research and also trained internationally. Close would be absolutely great, but is may also need to be secondary. Thank you, very much, Catharine
    markincleveland 5 Replies
    • January 27, 2010
    • 03:05 PM
    • 0
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  • i also have CVID since i was 13 im currently 24 i recieve a monthly infusion of IVIG when i found out i had CVID my levels were 300 was told they should be 4000 correct me if im wrong but ya that is a horrible number in comparison to what it should be i have been getting infusions since i found out and my levels are the same
    olseahorse 3 Replies
    • November 4, 2010
    • 08:00 AM
    • 0
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  • Hi, I need to find a doctor in southern michigan or northern ohio that treats CVID and associated autoimmune problems. Are there any Rheumatologists that follow and can prescribe the subq treatments? Thanks in advance.
    Anonymous 42,789 Replies
    • November 9, 2010
    • 08:44 PM
    • 0
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  • Hi, I need to find a doctor in southern michigan or northern ohio that treats CVID and associated autoimmune problems. Are there any Rheumatologists that follow and can prescribe the subq treatments? Thanks in advance.I agree with the statement that more of finding a physician as opposed to a hospital, however I've always been pleased with the Cleveland Clinic in general.
    Anonymous 42,789 Replies
    • November 10, 2010
    • 02:29 AM
    • 0
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  • I agree with the statement that more of finding a physician as opposed to a hospital, however I've always been pleased with the Cleveland Clinic in general.Who do you see at the Clinic?
    markincleveland 5 Replies
    • November 10, 2010
    • 03:56 AM
    • 0
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  • Hi, I need to find a doctor in southern michigan or northern ohio that treats CVID and associated autoimmune problems. Are there any Rheumatologists that follow and can prescribe the subq treatments? Thanks in advance.There is a new immunologist in Detroit, who did her fellowship in immunology in Cleveland. Let me know if I can help. I believe she was trained an a AAAAI member.
    markincleveland 5 Replies
    • November 10, 2010
    • 04:01 AM
    • 0
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