No pneumonia antibodies after pneumovax 23
Nov 3, 2015 18:33:02 GMT
Post by holly1234 on Nov 3, 2015 18:33:02 GMT
Hello everyone
am several months into investigations by immunology, having been referred last Feb by my lupus and Vasculitis rheumatology clinic due to hypogammaglobulinaemia (G, A, M consistently just below normal range) and lymphopenia (also consistently just below normal range) + a history of various types of persistent complex recurring infections. These deficiencies existed before I began rheumatology led immunosuppression in 2011 for what has turned out to be infant onset lupus + a host of secondaries inc sjogrens that have developed over my 62 years. My therapeutic doses of daily immunosuppressants are:
400mg hydroxychloroquine sulfate
1000mg mycophenolate mofetil Cellcept
3.5mg prednisolone
Over the past 4+ years, these meds have helped me feel generally better than I have since my 20s: this feels wonderful. ;Neither rheumatology nor immunology are suggesting a change to my autoimmune conditions treatment plans.
I understand that so far immunology investigations have made good headway into beginning to describe my immunodeficiency. at the outset, they discovered I have 0 (no) pneumonia antibodies. So I had the pneumovax 23, and was tested again: Then they found that I had again made 0 (no) pneumonia antibodies in response to pneumovax 23. So now I'm to have prevenar 13 (PCV13), and be tested to see if I make any antibodies. Also the immunology consultant made it clear that they have quite a lot more investigations to carry out before they can put name/s to my version of immunodeficiency.
meanwhile I'm packing a home emergency kit of coamoxiclav 625 (2 week course) and getting my head around the protocols re:
sputum/phlegm sample collection
post nasal drip collection
starting amoxiclav while lab sample is tested
changing antibiotic if lab results require this
going onto IV antibiotics if no significant pos response to antibiotics within 2-3 days and symptoms are severe
my respiratory infections (Bacterial tracheitis/poss bronchiectasis), the long term osteomyelitis I've had in my upper left jawbone associated with sinusitis, etc etc have been very responsive to high dose long course antibiotics over the decades. But no lab samples have ever been collected and, although there has been some imaging by various clinics, the only actual infection sample lab testing that has been carried out has been during my UTIs and pyelonephritis sessions (am quite good carrying out this sort of lab sample collection & home urinalysis)
My infections typically flare during late autumn-Spring. Over the months, I've spent a reasonable amount of time checking out what info NHS Choices et al have to offer re lab sample collections, my respiratory infections etc, and I've read several very helpful threads here on forum. Now I'd be very grateful for any advice or comments anyone feels like giving re the finer points of how best an individual like me might manage all this recognising onset of infection promptly, new lab collections etc etc stuff....for instance, am vague about the point at which I should decide I probably have an infection & had better start sampling (my immunosuppression complicates the signs and signals, for instance my temperature tends to stay only just above normal).
Also, I'm particularly interested in the possible significance in a case like mine of producing 0 (no) antibodies after the pneumovax 23. I gather this can indicate possible CVID.
thanks in advance
am several months into investigations by immunology, having been referred last Feb by my lupus and Vasculitis rheumatology clinic due to hypogammaglobulinaemia (G, A, M consistently just below normal range) and lymphopenia (also consistently just below normal range) + a history of various types of persistent complex recurring infections. These deficiencies existed before I began rheumatology led immunosuppression in 2011 for what has turned out to be infant onset lupus + a host of secondaries inc sjogrens that have developed over my 62 years. My therapeutic doses of daily immunosuppressants are:
400mg hydroxychloroquine sulfate
1000mg mycophenolate mofetil Cellcept
3.5mg prednisolone
Over the past 4+ years, these meds have helped me feel generally better than I have since my 20s: this feels wonderful. ;Neither rheumatology nor immunology are suggesting a change to my autoimmune conditions treatment plans.
I understand that so far immunology investigations have made good headway into beginning to describe my immunodeficiency. at the outset, they discovered I have 0 (no) pneumonia antibodies. So I had the pneumovax 23, and was tested again: Then they found that I had again made 0 (no) pneumonia antibodies in response to pneumovax 23. So now I'm to have prevenar 13 (PCV13), and be tested to see if I make any antibodies. Also the immunology consultant made it clear that they have quite a lot more investigations to carry out before they can put name/s to my version of immunodeficiency.
meanwhile I'm packing a home emergency kit of coamoxiclav 625 (2 week course) and getting my head around the protocols re:
sputum/phlegm sample collection
post nasal drip collection
starting amoxiclav while lab sample is tested
changing antibiotic if lab results require this
going onto IV antibiotics if no significant pos response to antibiotics within 2-3 days and symptoms are severe
my respiratory infections (Bacterial tracheitis/poss bronchiectasis), the long term osteomyelitis I've had in my upper left jawbone associated with sinusitis, etc etc have been very responsive to high dose long course antibiotics over the decades. But no lab samples have ever been collected and, although there has been some imaging by various clinics, the only actual infection sample lab testing that has been carried out has been during my UTIs and pyelonephritis sessions (am quite good carrying out this sort of lab sample collection & home urinalysis)
My infections typically flare during late autumn-Spring. Over the months, I've spent a reasonable amount of time checking out what info NHS Choices et al have to offer re lab sample collections, my respiratory infections etc, and I've read several very helpful threads here on forum. Now I'd be very grateful for any advice or comments anyone feels like giving re the finer points of how best an individual like me might manage all this recognising onset of infection promptly, new lab collections etc etc stuff....for instance, am vague about the point at which I should decide I probably have an infection & had better start sampling (my immunosuppression complicates the signs and signals, for instance my temperature tends to stay only just above normal).
Also, I'm particularly interested in the possible significance in a case like mine of producing 0 (no) antibodies after the pneumovax 23. I gather this can indicate possible CVID.
thanks in advance