I have unusual presentation of hypogammaglobulinemia. Last spring I started bruising for no reason and had purple skin on my feet, knees and hands. They ran all kinds of tests and felt I likely had cutaneous vasculitis and put me on prednisone. I started to feel tired and even on the prednisone started to lose weight due to poor appetite. I finally made an appointment w/a clinical/research immunologist thinking it was an autoimmune type disorder even though I tested negative for everything. I brought all my labs and he zeroed in on my slightly low globulin test. He ordered full immunology labs and told me I had hypogammaglubulinemia. I am low in IgA, IgG and IgM. By this time, I was off the prednisone and feeling absolutely horrible-flu like symptoms and joint pain. I still have the purple skin and my fingers are swollen, then I got carpal tunnel which they feel is being caused by the inflammation. The docs think I have autoimmune like symptoms being caused by the low immunity...does anyone else have this? I haven't had massive infections, just sinus/chest infections. But have a lot of diarrhea. My biggest complaint is constantly feeling tired and in the a.m., feel so achy. I'm only 48.

I just saw a new immunologist that is in my insurance network and he said my levels were dangerously low-I don't think they're that low. Anyway, I have to have more lab looking at T cells as he said if that's off, it is a different diagnosis. Anyone know what he means? Then he came right out and asked me if I had aids. I have two adopted children and you have to be aids tested for your homestudy, so I'm sure I don't have it.

I won't have the IVIG until I have this Tcell lab and it's not offered at a regular lab so he has to get referral. Hopefully, I'll start in two weeks. What are your experiences w/IVIG-I've read the side effects but would like to know personal experiences.

My daughter Abby is 15 months old has a rare form a agamglobulinanemia. She has Turners syndrome. She is missing an x chromosome. However the 2 are usually never linked. She does great on the IGIV. We actually get her infused at home. As long as she gets gamunex she is great. Have your CBC been normal. I was wondering about your white blood cells? Abbys site is www.caringbridge.org/visit/abigailmellen. Just in case you wanted to see the train wreck we have been going through to get this dx. SOmetimes it is harder when the pt cannot speak for themselves. I am glad someone finally found what was wrong. FYI NIH in bethesda is doing a study that you would probally qualify for. Dr UZel is the Dr and is wonderful. They will get you there and pay for everything. I hope this helps.

MY personal adivice having had all the syptoms you described is Get the IVIG as soon as possible! Have the Drs. run blood tests for electrolytes (specificaly Vitamin D and Ca), hemoglobulin levels, everything. I have been getting IVIG for 15 years and it greatly improves your quality of life.

There are side effects, but if you do a IG level study after you receive your first dose, your Dr can determine how much and how frequently you receive it. I get it 2 times a month and my dose is greater than 400mg/kg.

Good luck!

This is my first time on this forum--I'm excited to be talking to people like me. I've been chronically ill for 20 years, mostly sinusitis and bronchitis. I was always told that I didn't get THAT sick, or that I was a hypochondriac, or (my favorite) it was in my head! I was finally diagnosed last year as IgM deficient by a wonderful wonderful doctor who found what others didn't. Now the other shoe has dropped and I am CVID--low IgM and negligible IgG antibody titres.

My doctor tried one last shot (literally) at boosting my antibodies by giving me a newborn baby's innoculation shot of Prevarin--it is "conjugated with protein not sugars" (I think I got that right). I felt fabulous for about 10 days and then returned to my normal weak, tired, achy and sometimes painful joints and muscles. On Tuesday my latest blood tests will be read. My doctor has talked extensively with me, and we're pretty sure he will then put me on IVIG.

My huge question--I understand the negative effects, but I urgently want to know the positive effects. Will I feel strong again, will my aches go away, will I no longer feel I have to lay in bed for hours because I'm just too tired?

Also, has anyone else had chronic fatigue and this? One of the classic symptoms is that exercising, while great for you, also makes you exhausted and you have to sleep. If I do a good work out at a gym, I often have to sleep for several hours afterwards. I am wondering if my chronic fatigue symptoms might not be part of CVID. My wonderful immunologist doesn't know much about CF and I don't feel like going to yet one more doctor to get an answer. Does anyone have any thoughts?

I greatly look forward to any advice, support anyone can give.

I have been being treated for CVID (different name same disease). A symptom of CVID is a "sprue-like syndrome". If you look up celiac disease aka non-tropical sprue. We dont actually have it but our bodies act like it, so don't cut out gluten, tried it no help. We also can have malabsorbtion and a B-12 deficiency.

The IVIG helps but avoid steriods as much as possible. You may also have fibromialgia ( leg pain muscles and joints) sound familiar??

Feel free to contact me with questions as I have researched it my self and with my doctor.

Good luck
Robbi

Hi there, I know you posted this ages ago but wondered if you could tell me what has happened to you. I am going through what sounds like a similar experience at the moment. Been having infusions of IVIG for just over a year and suffered from severe diarrhoea for last couple of years which became worse over the last 6 months or so. They diagnosed me with coeliac disease but now have said it's connected to the CVID and I think it is what you have described, 'sprue-like syndrome'. I've lost 6 stone in weight over the last year as I haven't been absorbing any food. I'm now on supplements and trying to gain weight. Does it sound similar to yourself?

Shelbie [13] has CVID. All of her levels are low. She has fibromyalga, arthritis, had the surgery for gurd [made huge difference]. Doctor thought she had celiac disease, went on gluton free diet for one year, no difference, dropped that diet. She is also tired alot. She gets IVIG every 4 weeks. Gets premeds to prevent reaction and does very well. Being on the gammma infusion has made her life much better...no more pneumonia and/or bronchitis. No more missing month of school. She has chronic sinus problems [many surgeries] but the IVIG has been great. She also has many allergies...milk, dairy, most things outside air, mold, mildew, cigarettes, her own tears, her own blood. She has brittle bones [ 3 breaks in 3 years in gym, doesn't take gym anymore, hyper flexability syndrome. Couldn't hear when born, corrected at 11 months, eyes didn't work together, visual therapy for almost a year, wears contacts now. She has had 36 surgeries. We make sure she has IVIG before surgeries which helps healing. None of her baby shots stayed in her body. All this and she is a beautiful girl who keeps on going, researches her diseases, misses about 40 days a year of school but still on honor roll. She is not brilliant, just works very hard. She started getting IVIG at age 6 and it absolutely makes her feel better. Spend alot of time at duPont Childrens Hospital in Wilmington. Her theory: at least she gets to go home!! If she can handle all her problems anyone can. She is my hero!!