| |
Discussion Topic: Adult with CVID
-- page:
1
2
|
|
 |
08-20-2005 @ 10:20 AM
|
|
|
|
|
I am 45 and was diagnosed with CVID five years ago. It took for me to have several brushes with death before being sent to a great immunologist who diagnosed me with CVID. I know I suffered as a child with this;not as severe as in my adult life. I had pneumonia at 4yrs.old and bronchial pneumonia at 9yrs.old and it took a couple of months to get rid of them. In between and after I remember often complaining of swollen glands and I had low grade fevers a lot. I was called a hypochondriac by my mother until she got me to the doctor and my white blood cell count showed elevated from blood tests. At 19yrs.old my lymphnodes in my neck and groin were so swollen along with low grade fevers my doctor tested me for lymphoma;thank God it was (-). In my 20's I started getting pain in all my joints, low grade fevers and my asthma landed me in the E.R. and many hosp. stays. In my 30's I would get kidney infections and doctor said I had irritable bowel syndrome(I'll spare you those details).Late 30's my life was one long drawn out case of double pneumonia, swollen painful joints and 3 close calls of almost dieing.9 times in 1-1/2 years I was in the hospital for double pneumonia. I thought it would never end. With help from my new PCP and the immunologist he called to help him with my case I am alive. I am on weekly infusions of Gamunex-method is SubQ.(My veins are not good for IV.) I am looking for other adults with a Primmary Immune Disorder to talk to and also listen to.Hope to hear from someone soon.
quote:
Follow Your Passion
|
| |
|
09-01-2005 @ 9:54 PM
|
|
|
|
|
I was diagnosed in my twenties and have been taking Gammagard for 13 years. I haven't suffered as severe as I've read here, but lately I've had trouble with the treatment itself.
I can sympathize with the IBS, and I get very stiff in the joints when I'm still for very long.
They have stretched the treatments to four weeks apart because of lack of product and cost factors, but now I am having symptoms like I was before I started treatments.
Snophinatr@aol.com
|
| |
|
09-11-2005 @ 11:44 AM
|
|
|
|
|
Hey there,
I'm 44 and have been recently diagnosed with CVID. I too have suffered the same history of chronic and occasional life threatening infections. I've lead a very dynamic life so far, with a demanding job and a family of five (including myself)to support. The doctors say I've been very lucky to have arrived at my diagnosis in such good shape. Guess my T-cells and Complement have been working overtime. My levels of IvG,A, and M are barely measureable... lucky indeed. I'm presently going through start up of IVIG therapy (Gamunex 10%) and am due for my second treatment next week. Doses, rates, and resultant levels are all being established. I've urged my doctors to prescribe the SubQ Infusion method ASAP due to it's convenience in freedom of self administration. My job and career (including what that pays for all of this) is done without it. But they first want to get comfortable with the more traditonal method before making the change. Guess that's just good science.
I'm deeply interested in gaining as much info on the SubQ method as possible (ie equipments used, methods, how you get these equipments and Gama product). So far I've found a few things on the web and have come across, what appears to be, a great source that I hope to begin using to get my product and equipment when I get the go ahead from my doctor.
Do you or anyone else reading this thread have any advice or help toward getting this method of therapy established? What are your experiences with SubQ Infusion? Thanks in advance for your response. 
|
| |
|
09-17-2005 @ 3:14 AM
|
|
|
|
|
I am a 40 y/o adult with newly diagnosed CVID. I, too, have a long list of illnesses and searched many years for the answer as to why I was always so sick. My IGA and IGM levels were not measureable and my IGG was 27. I have some damage to my lungs and had sinus surgery just prior to my diagnosis, but have made it pretty well considering my numbers. I'm also a mother to 7 (3 his, 2 mine and 2 ours) and work full time as a nurse at night. I know how to live dangerously! Anyway, I've had 3 IVIG treatments and so far plan to have 1 more and then go to subq. Subq certainly sounds like the way to go to maintain more stable levels and for cost and convenience. I have insurance through work, but at the price of our treatment, I have to keep in mind my lifetime maximum and try all I can to not get there any quicker than possible. God bless you all who are fighting the same battle as I am and it is good to find this site. I imagine most of you are relieved, as I am, just to know that you're not crazy! You've been sick for a reason and it is not your fault.
Roxana
rayroxyestep@cox.net
|
| |
|
11-17-2005 @ 12:46 AM
|
|
|
|
|
Hi
I am 41 years old and I was diagnosed CVID when I was 18 months old. I was treated (with some kind of injections) for over a year and my mother and I were sent home saying that I would outgrow it. Well, I never did. I have always gotten infections and it would always take me two courses of antibiotics to get over things if not three.
For the last five years I have had a sinus infection. I have taken antibiotics, it starts to get better and then whamo within two weeks I have it agian. Lately I have had no energy at all, and the sinus pain in my head is unreal! Since I was a child I have had joint pain (they said it must be growing pains, well I have stopped growing!), and I have always had swollen lymphnodes. Sometimes my neck is so swollen, it looks like I don't have a neck. While searching chronic sinus infection CVID kept coming up, and I have all the symptoms besides I was diagnosed when I was 18 months.
My question is, how do I find a doctor that knows how to treat this?
I guess I was really lucky before because my mom said my pediatrician diagnosed me when I had pnumonia and just wouldn't get better.
One thing my doctor did when I was little, he took me off of all dairy products. My mom says that helped right away. I have no idea where to go for help, as I have not found anyone that can treat me so far.
|
| |
|
11-17-2005 @ 9:30 AM
|
|
|
|
|
All,
I'm having a heck of a time here keeping up with this thread. Anyone else upset with the slow PM review process? By the time the Post gets released, I've gone on to other things and have forgotten I even left a post here. Admin, can you do anything about this? There's a lot of adults out here that are being diagnosed with and treated for PID (including me) and I believe a quicker turnaround time on the PM's would greatly contribute to more lively thread following and active conversation... OK, my two cents.
Hey gang,
Been on the road for the last couple months. Had to fly myself home for my monthly infusions, but the treatments are going well. My heart sank when I got reviewing some of my old medical documents the other day. I became so used to being sick that the constant doctors visits and antibiotic use had become a way of life. I've been three months now with no infections and I believe this is a personal record.
Have any of you using the SubQ therapy had experience traveling overseas with your infusion gear and product? How does it travel? Is getting it through security or customs of issue? I can only imagine some overzealous security guard popping open all my product in his bag search. 
Thanks guys, God bless. Talk to you in a month or so after this PM posts. 
|
| |
|
10-04-2006 @ 2:31 PM
|
|
|
|
|
Hi,
I am too a patient with CVID, and have had since I was 10, I am now 28. I was reading your discussion thread on info4pi.org today, and noticed you get stiff joints. I recently began getting this problem, and actually have lost most of my cartlidge in my right knee, pain is incredible. My own research and my own experience has led me to believe the joint problems are related to CVID. Last week my left knee went very fast (previously no problem), to be on par with my right knee. Funny thing happened on Monday went for my IVIG treatment and the problems with joints have dramatically cleared up, if I was to put a number on it at least a 75% improvement.
I guess my question is have you had this same pattern .....?
|
| |
|
10-11-2006 @ 4:34 PM
|
|
|
|
|
I was diagnosed December 2005 at age 46. I was having problems with my joints just prior to being diagnosed. I notice an incredible relief in my joints, particularily my knees after my infusions. I have also found that taking calcium helps too.
One problem I also have is my sense of smell is off the scale. If someone in my office burns a bag of popcorn in the microwave, I can smell it for a week after and will ultimately end up with a sinus or respiratory infection. I'm wondering if anyone else has this problem as well.
|
| |
05-25-2007 @ 2:08 PM
|
|
|
|
|
Finally! Adults who have this disease. I am a 40 year old woman, recently diagnosed. I have only met children and have been able to talk with their parents, but would love to hear from other adults who suffer from this. If you would like to contact me, let me know. TextTextTextTextText
|
| |
|
06-20-2007 @ 9:50 PM
|
|
|
|
|
Hi I have had CVID for about three years now. I go every month for the IV. I was wondering what is this SubQ therapy? I get my reports from the Hospital every time I go and right now it seems everytime is fine. I was if anyone in Burlington Ontario area that has CVID maybe we could chat. Please reply anyone with CVID that finds something new.
|
