Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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Just diagnosed with CVID, could they be wrong?

I a 37 year old nurse. My doctor sent me to a rhumatologist because of weakness and pain in my joints. She did blood tests and found my immunoglobulin A to be 27 and immunoglobulin G was 400. I also have vitamin B12, D and potassium deficiency. I am extremly tired and my body aches if I do anything physical. I went to an immunologist who said I had CVID. He wants me to start IV treatments in two weeks and I am worried what to expect. Does anyone know how often this is misdiagnosed? What should I expect from the treatment? My family thinks they are wrong because I "dont seem sick to them" It is very frustrating and is happening so fast I would love someone to talk to who has been there. thanks!

Replies

deleted_user
deleted_user

Hi,

I can't give you much information as I'm new here also and undiagnosed so far.

I'm wondering what the normal ranges are listed as for the test results you gave?

Also, did the immunologist do other tests specificlly to see if you produce antibodies to certain vaccines?
deleted_user
deleted_user

Hi, I know that the normal range globulin A is 81-463, and globulin G is 694-1618. They did test for antibody vaccines and I am loosing them. I am no longer immune to mumps, measles or hep B. Being a nurse, I have had all my innoculations this year, but my recent titers came back negative. Did you have the same results? Do you know your globulin numbers? I am lucky to have a great doctor that gave me 4 pages of my blood work and the normal ranges for each test. Let me know what yours are.
deleted_user
deleted_user

Hi again,

I'm going to repost my first post here for you. I posted it a while ago and haven't had a response. I don't think this board is very active though you may find it different since you have a diagnosis. I am waiting to see an immunologist at this time so I'm still kind of in limbo. Since I havent seen the immunologit yet I haven't had the antibody testing.

From what I've read many people do very well on th IVIG treatments and feel much better.

I'm searching for a more active forum to try and get some help. I will let you know if I come across anything.

Here's my first post and info:
Hi all,

I am a 41 year old woman. I've been unwell and on disability since my early 20's. I have a diagnosis of CFIDS and Dysautonomia.

I have a teen daughter who is on homebound education with very similar symptoms to mine. I'm desperately trying to find a diagnosis and help for the both of us.

My health fluctuates. I go from bedridden to almost feeling completely well and back again. I'm in a down turn at the moment and trying to keep a positive outlook. It's not easy sometimes.

When I'm feeling poorly I suffer with severe fatigue, chills, night sweats, excessive day time sweating though no real fevers, headaches, swollen lymph nodes, yeast infections (chronic), chronic UTI's, muscle pain, severe joint pain, diarrhea for the past 2 years, 30 lb weight loss, nausea nd lack of appetite, orthostatic hypotension (my BP drops when I stand or sit too long causing fainting) and just general malaise.

My PCP gives me Nystatin and Diflucan for the yeast and that's about it.

He's done numerous workups which haven't found much of anything. I do have an enlarged spleen and Mitral Valve Prolapse and anemia.

About 10 years ago I was given 5 courses of IVIG. My doc said this was to help with the CFIDS. I did not note any improvement.

At my urging he agreed to send me to an immunologist. I just feel that I really need to find out if there's something that can be done since my daughter also suffers. If there's anything I can do to help her I will do it.

My doc gave me blood test results to bring along. The results of which are below (abnormals are *'ed:

IGG Subclass 1 365 (Normal 344-966)
IGG Subclass 2 164 (Normal 133-622)
IGG Subclass 3 40 (Normal 12-138)
IGG Subclass 4 1 (Normal 1-115)
IGG Totl 595 *(Normal 600-1600)

IGG Subclass 1 499 (Normal 344-966)
IGG Subclass 2 192 (Normal 133-622)
IGG Subclass 3 71 (Normal 12-138)
IGG Subclass 4 2 (Normal 1-115)
IGG Totl 741 (Normal 600-1600)

IGG Subclass 1 449 (Normal 423-1112)
IGG Subclass 2 148* (Normal 149-586)
IGG Subclass 3 40 (Normal 29-142)
IGG Subclass 4 1.3 (Normal 1-187)
IGG Total 611* (Normal 700-1500)

Immunoglobulin G 819 (Normal 700-1500)
Immunoglobulin A 94 (Normal 60-400)
Immunoglobulin M 65 (Normal 60-300)

I also had a bone marrow biopsy a few years ago to rule out Leukemia. The biopsy showed absent stainable iron and "a diffuse polyclonal reaction to all antisera".


Basically, what I'm hoping is that maybe someone knowledgable could look over these results and give me an opinion?

I could of course, just take the CFIDS diagnosis and leave it at that but I want to make sure i've explored every avenue.
deleted_user
deleted_user

Hi again,
It dosent look like your globulin numbers are that low but I would push your doc to find you an immunologist. From what ive read people with this show all different kinds of symptoms. Have they checked your thyroid funtion or done a CT to look for nodules? That would explain your night sweats, weight loss,sweating and swollen lymph nodes.At work I have seen alot of people with orthostatic bp, unfortunitly we put them on meds and send them home to see their PCP before a we find a cause. I know how you feel about your daughter, Yesterday my kids had to be tested for cvid it was hard to tell them that they may have to have infusions for the rest of their life. Its a shame this board isnt active, if you find a better one please let me know and I will do the same.
stimpy
stimpy

Hi. I have CVIDS and through Kaiser my test results show that for normal IgG range should be 768-1536, mine is
stimpy
stimpy

Hi I was diagnosed with CVIDS in 1995. I have Kaiser Permenente Insurance in California. My blood tests came back as showing the normal range for IgG is 768-1536 mine is negative34, for IgA results normal is 139-347 mine is negative 7.0 for IgM normal is 68-190 mine is 8, I have been receiving infusions of gammaguard for last 15 years on and off. Have worked great for me, no side effects. I would not predict any unless you have other issues happening.
deleted_user
deleted_user

Hi,
I am surprised that you have negative numbers. That makes me wonder if mine are low enough to need the infusions. This whole thing caught me by surprise, they were looking for arthritis or a connective tissue disorder. I dont have to many health issues. Mitral valve prolapse, and my joints pop in and out of place, and a herniated disk in my back, I am just weak and tired alot. Im not worried about my insurance I work at the hospital so im covered for the teatment.
stimpy
stimpy

Hi again Sloane. What I know about having CVIDS is that is presents with chronic upper respiratory infections, because all the immunoglobulins that you are low on, fight off any invading bacteria that penetrates mucus membranes and causes infection. That's what CVIDS does. The joints and muscles could be caused by something else, but whatever you do you MUST be treated by a competent immunologist, don't rely on a PCP or a hematologist.
deleted_user
deleted_user

Hi,
I saw one immunologist but I did have my PCP set me up with another one for a second opinion. The first one I saw scared me. I went in there thinking I had MS which was the doctors initial thought and came out having CVID. I dont think im that sick. I have my share of colds and flu but I work full time and go to school at night and take care of two teenagers. From what ive heard people with cvid are sicker than me. I think im going to hold off on the treatment until I get a second opinion. Did you see more than one doc?
deleted_user
deleted_user

Hi,

I thought maybe thse 3 links might be of interest to you.

Diagnostic criteria: Common Variable Immunodeficiency (CVID)
http://74.125.47.132/search?q=cache:1U3lOJMARC8J:www.esid.org/downloads/cvid_diagnostic%2520crit.doc+diagnostic+criteria+cvid&cd=1&hl=en&ct=clnk&gl=us&client=opera

and Differential Diagnosis of Hypogammaglobulinemia

http://74.125.47.132/search?q=cache:Pbfidq19LHkJ:www.esid.org/downloads/Differential%2520Diagnos.doc+Differential+Diagnosis+of+Hypogammaglobulinemia&cd=1&hl=en&ct=clnk&gl=us&client=opera


Debate re: diagnostic criteria:
http://74.125.47.132/search?q=cache:fn4xa6sfBhYJ:www.esid.org/downloads/New_criteriaPAD.ppt+diagnostic+criteria+cvid&cd=2&hl=en&ct=clnk&gl=us&client=opera

Don't know if any of this pertains to you but I'm hoping you can glean something from it.
deleted_user
deleted_user

Hi Sloan: After an entire year on just about every antibiotic known, endless sinus infections and sinus surgery I was finally diagnosed by a very sharp E.N.T. doctor on my 38th birthday. I receive gamma globulin infusions every 4 weeks. I have had 2 reactions to the treatments in 4 years. One reaction was due to the incompetent hospital staff where I USED to go for treatment and just recently, after giving up all of the premedications, I developed hives. Nothing a couple of benadryl couldn't cure. Hang in there, I know how you are feeling. I now have my treatments done in the comfort of my living room where my nurse comes and administers the meds to me. We watch episodes of 24 that I record on my DVR, if I don't fall asleep from the benadryl first. I did, travel 200 miles roundtrip to and from Boston to get a second opinion at Children's Hospital and I began my treatments at Brigham and Women's Hospital. My first infusion took 13 hours because they were super conservative and super knowledgeable. I don't know where you live, but my advice would be to go to a large city or university hospital that deal with a lot of CVID patients. I guess there are more of us in big cities than out in the country! Email me with any questions. I will try to answer them for you. I have gone from constant infections and being tired all the time to one or two a year. The treatments are definitely worth it.
deleted_user
deleted_user

Thanks!
Im actually feeling better about the whole thing. My immunologist made it sound like a death sentence but after hearing from all of you im not so scared. Im going to take some advise from you guys and take benedry and tylenol. I live in a small town in Michigan, but Im not far from U of M Ann Arbor which is the best place to go around here. Its nice that you get treatments in your home, I guess thats something I will have to ask my insurance company about. The immunologist never mentioned that option. He told me he has only diagnosed 7 people in the last 20 years, and when I went back to my pcp he said he would research cvid more because he wasnt that familiar with it. I am glad they are honest with me but at the same time it makes me nervous. Which is where I am now waiting for a second opinion. How long do your infusions take now?
deleted_user
deleted_user

In my case, the infusion takes 4 hours. I had them at a local hsopital for a short time until they infused me so quickly, I could barely get out of the car after a 20 min ride. I proceeded to get the worst body aches of my life and I threw up for about 16 hours. This is not meant to scare you, only to inform you. After that infusion, my immunologist who is in Boston, ordered that my infusions be performed at Brigham and Women's Hospital. The next one took 13 hours! The two nurses, my wife and I closed the wing of the hospital down that night! After two more infusions there, I began them at home. My nurse is great!! After the extra infusion, I ended up with Aseptic meningitis. That was the bout with the body aches and vomiting. When you find an immunologist at the UM ask tons of them (and they will know this) to infuse you very slowly for your first few times to see how your body reacts to the gamma. I used to be premedicated with solumedrol(IV prednisone) before each infusion. Now it's just tylenol and benadryl which kind of gives me a hung over feeling the next day. Also drink plenty of water the day of my infusion. It helps bring the veins to the surface for easier IV starts.
deleted_user
deleted_user

Hi again,
Thats good to know because the one immunologist that I saw said it would take 3 to 4 hours, sounds like I need to put my foot down and have them spread it out a couple hours. So far, I dont have much faith in this guy. I am still waiting for my pcp to set me up with a second opinion. How did an extra infusion cause meningitis? Do you ever wory about catching something from the donated gamma? I know these days everything is screened very well but that thought has been in the back of my mind lately.
deleted_user
deleted_user

Hi Sloan:

I meant to type extra fast infusion, not extra infusion. The rate they infuse you is very important. Take it from me. I think it is based on your height/weight, which determines the amount of gamma to be infused. The speed with which I received the gamma caused the symptoms. It was just too fast. My infusions kind of go in steps now. I start really slowly for 15 minutes then the pump beeps then it speeds up a little more for 15 minutes until it finally reaches its max. My immunologist has given me the option of subcutaneous infusions (under the skin) once a week. If I opted for those, I would have to either give them to myself or they would train my wife to give them to me. Instead of one four hour infusion, I would have four one hour infusions. I have chosen to stay with the one four hour. When I was first diagnosed, I was scared to death about catching something! With the help of my wife and my pastor and doctor I have come to realize that it is beyond my control. The gamma is sanitized and the donors actually donate for a living. They are heavily screened and ultimately God is in control, as much as I would like to be some times! Your nurse will document the lot numbers from every dose of gamma in your chart. Someitmes people have slight reactions to the sanitizing agents that are used. They used three different brands of gamma on me at the local hospital (I think is was cheaper for them) until my doctor found out and insisted on Gammunex. It has worked well for me. Last year I was able to retire after over 20 years as a deputy sheriff and have begun a new career. I am actually at home at night with my family and on weekends and holidays now, before my kids are all grown up. I am thankful that the treatments are successful for me. I am confident the infusions will work for you. Remember to ask lots of questions of the immunologist. I am the only patient that my primary doctor sees that has CVID, so you're not alone by any stretch. If they are unsure push them to contact other doctors or to refer you to others who are more experienced with CVID. I'll check back tomorrow. Please feel free to leave more questions. :)