My Story - Elaine
Feb 12, 2014 0:05:15 GMT
Post by elained on Feb 12, 2014 0:05:15 GMT
I guess I was supposed to create a new thread!
I think all of us have different CVID stories. My research Immunologist has 250 CVID patients, and they are all different, even genetically and in other test results, and probably their 'stories' are different too.
I was always sick as a little kid, severe eczema with boils from birth, and respiratory illnesses , tho' never pneumonia. I was predicted to have asthma, but didn't. I had my tonsils out at 9.
I had allergy tests at about 9, and at various times after that and ALWAYS TESTED ALLERGIC to everything. Even I knew that wasn't possible. Had some allergy shots for about a year and a half, then stopped. Didn't see the point. Had some clear allergies: wool, ragweed, dust, molds, but nothing major.
My eczema lasted until I was about 27, and went away. That was a miracle.
Most of my life I felt that I didn't have the 'energy' that most people had. But from about 27-57 I had fairly 'garden variety' health. Never hospitalized for illness (except mono and bronchitis in college, back in the day when college put people in hospitals on campus...long gone today of course).
At 57, after being treated for hiatus hernia and 'heartburn' for almost two years, I was found, instead, to have severe unstable angina, produced by three heart blockages, one artery (left anterior descending artery - the 'widow maker') blocked 95%. I had three angioplasties and two stents. At 60, I developed symptoms of Sjogren's Syndrome, followed by a septic kidney infection, chronic UTI's (diagnosed as Interstitial Cystitis), anemia, Meniere's Disease, two Idiopathic bowel blockages episodes, bizarre fungal infections on the soles of my feet, a strep infection in my back, and culminating with profound peripheral neuropathy. And at 69 my Immune Deficiency was found my a faculty Rheumatologist at Duke University.
I was completely skeptical that I really had an immune deficiency, although I had always tested negative for autoimmune conditions (which seemed like what I had) and positive for allergies (which I didn't have to the great extent that I tested for). I had low IgG, 322, low IgM 18, normal IgA, and my IgE was 5 with the low end at 4. Clearly I didn't have true allergies, as my IgE was not high at all.
I dithered around for over a year, until I found myself getting sick all the time with respiratory infections and large scale cold sore outbreaks, including one on my back.
I talked again with an immunologist last March, 2013, and was tested for the Pneumovax. I had one immunity out of 21.
My husband is a research immunologist, and he was also skeptical. But I found the best possible research Immunologist at Duke, and we visited her together. She determined that I should start on Subcut, Hizentra.
I had 8 subcut infusions with Hinzentra, and they were each followed in 48 hours by a severe reaction: profound fatigue, pain, depression and severe itching and burning skin.
My immunologist switched to Gammagard subcut, and I had the same reaction.
She then switched me to IVIG, and medication with methylprednisolone (Medrol) a Prednisone type drug. The Medrol suppressed the reaction. I've had two IVIG treatments and will have the third one on February 13. I'm reducing the amount of Medrol to find if I continue to have IVIG without reactions, and to find the lowest possible dose, with the hope that one day I will stop having the reactions altogether.
BOTTOM LINE: I haven't had one respiratory illness this winter, and only one small episode of herpes simplex (cold sores).
I do believe that my diagnosis of CVID explains my entire history of illness, except possibly the peripheral neuropathy, which may have been induced by the antibiotic I took for the chronic UTIs.
It is quite amazing to have this diagnosis and this treatment at age 71, almost 72 (March 2).
Since my heart procedure at 57, I feel that all of my life since is a 'bonus round'.
Hugs, Elaine
I think all of us have different CVID stories. My research Immunologist has 250 CVID patients, and they are all different, even genetically and in other test results, and probably their 'stories' are different too.
I was always sick as a little kid, severe eczema with boils from birth, and respiratory illnesses , tho' never pneumonia. I was predicted to have asthma, but didn't. I had my tonsils out at 9.
I had allergy tests at about 9, and at various times after that and ALWAYS TESTED ALLERGIC to everything. Even I knew that wasn't possible. Had some allergy shots for about a year and a half, then stopped. Didn't see the point. Had some clear allergies: wool, ragweed, dust, molds, but nothing major.
My eczema lasted until I was about 27, and went away. That was a miracle.
Most of my life I felt that I didn't have the 'energy' that most people had. But from about 27-57 I had fairly 'garden variety' health. Never hospitalized for illness (except mono and bronchitis in college, back in the day when college put people in hospitals on campus...long gone today of course).
At 57, after being treated for hiatus hernia and 'heartburn' for almost two years, I was found, instead, to have severe unstable angina, produced by three heart blockages, one artery (left anterior descending artery - the 'widow maker') blocked 95%. I had three angioplasties and two stents. At 60, I developed symptoms of Sjogren's Syndrome, followed by a septic kidney infection, chronic UTI's (diagnosed as Interstitial Cystitis), anemia, Meniere's Disease, two Idiopathic bowel blockages episodes, bizarre fungal infections on the soles of my feet, a strep infection in my back, and culminating with profound peripheral neuropathy. And at 69 my Immune Deficiency was found my a faculty Rheumatologist at Duke University.
I was completely skeptical that I really had an immune deficiency, although I had always tested negative for autoimmune conditions (which seemed like what I had) and positive for allergies (which I didn't have to the great extent that I tested for). I had low IgG, 322, low IgM 18, normal IgA, and my IgE was 5 with the low end at 4. Clearly I didn't have true allergies, as my IgE was not high at all.
I dithered around for over a year, until I found myself getting sick all the time with respiratory infections and large scale cold sore outbreaks, including one on my back.
I talked again with an immunologist last March, 2013, and was tested for the Pneumovax. I had one immunity out of 21.
My husband is a research immunologist, and he was also skeptical. But I found the best possible research Immunologist at Duke, and we visited her together. She determined that I should start on Subcut, Hizentra.
I had 8 subcut infusions with Hinzentra, and they were each followed in 48 hours by a severe reaction: profound fatigue, pain, depression and severe itching and burning skin.
My immunologist switched to Gammagard subcut, and I had the same reaction.
She then switched me to IVIG, and medication with methylprednisolone (Medrol) a Prednisone type drug. The Medrol suppressed the reaction. I've had two IVIG treatments and will have the third one on February 13. I'm reducing the amount of Medrol to find if I continue to have IVIG without reactions, and to find the lowest possible dose, with the hope that one day I will stop having the reactions altogether.
BOTTOM LINE: I haven't had one respiratory illness this winter, and only one small episode of herpes simplex (cold sores).
I do believe that my diagnosis of CVID explains my entire history of illness, except possibly the peripheral neuropathy, which may have been induced by the antibiotic I took for the chronic UTIs.
It is quite amazing to have this diagnosis and this treatment at age 71, almost 72 (March 2).
Since my heart procedure at 57, I feel that all of my life since is a 'bonus round'.
Hugs, Elaine