no (0) pneumonia antibodies, still none after pneumovax 23

[holly1234]

Hello everyone

i posted this in the general discussion section originally, but have a feeling I should've posted it here.  Most of this is background, but I do ask 2 questions at the end: hope you get that far!

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, all of which have developed gradually 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 following what I gather is a typical protoco: packing a home emergency kit of coamoxiclav 625 (2 week course).  Am also getting my head around the protocols re:
Pre-antibiotics sputum/phlegm sample collection and/or 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 and on the PID website etc.  

Now I'd be very grateful for any advice or comments anyone feels like giving re the finer points re:
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


Read more: primaryimmuno.proboards.com/thread/858/pneumonia-antibodies-after-pneumovax-23#ixzz3rVZnp05c

[hlh]

My Dad also has a form of hypogammaglobulinemia that they call Specific Antibody Deficiency. He has low normal/borderline antibodies, but he has trouble making antibodies to vaccines. So like you, he doesn't respond well to the Pneumovax.

However, he responded well to Prevnar. That often works better for people who need a boost to their immune systems.

Interestingly, my father also has lymphopenia - like you.

[holly1234]

Yes, this is interesting. Many thanks. Exactly the sort of insight I hoped for

[holly1234]

PS. Hello again hlh: just now I did a search on forum re Specific Antibody Deficiency which came up trumps...lots of really good info I can relate too.

So I gather that immunology finds it significant & interesting that:
I have a history of ipulmonary & ENT nfections
I have no pneumonia antibodies at all
it's probable I've historically never produced pneumonia antibodies
Recently I've made no pneumonia antibodies in response to pneumovax 23 
my immunoglobulins G, A, M are, and have been clearly & consistently below normal range even before immunosuppression meds for infant onset lupus

So, now I feel as if I better understand why immunology continues investigations in my case, and is giving me instructions re lab testing and treatment including trialing prevnar 13

Maybe you'll be interested that recurring complex persistent UTIs with pyelonephritis have been characteristic of my version of immune dysfunction since my early 20s.  Am 62 now, and these continued to be severe until last year when  urology finally began investigations and started prophylactic antibiotics.  At my immunology appt in October, the consultant told me that so little immunological research has focused on UTIs (as opposed to pulmonary infections), that immunologists cannot comment on the relevance of immunoglobulin deficiencies to my sort of UTIs.  I'd be glad to know if anyone has heard something similar from immunology.  So far, my medics are advising me that systemic lupus + sjogrens are mainly responsible for my version of these infections.  My suspicion is that my brand of chronic lymphopenia is equally responsible.

Whatever, I do feel I'm getting my head around this. so, am v grateful to you