Rheumatologist says sjogrens can predispose me to infections: comments anyone?

[EOLHPC]

Am preparing for IV zolendronate treatment to start soon, and at a recent Rheumatology Metabolic Bone Unit appt, the consultant noted my persistently low WBC & IgA + widespread dryness symptoms (my skin + every hole in my bod has a long term NHS clinic-prescribed treatment plan monitored annually in clinics), and said he believes that currently my secondary sjogrens is more active than my primary systemic lupus (infant onset)...and that he thinks my recent phase of persistent UTIS + kidney infections was caused by sjogrens dryness + these low bloods elements (both my lymphocytes & immunoglobulin A are always just below the acceptable normal range.)

I have been prone to infections. Especially of the respiratory tract & also Kidney + UTI infections (which have occurred in persistent phases throughout my adult life, so much so that I'm now resistant to various oral antibiotics). My infant onset lupus went unrecognised when I moved to the UK in the late '70s. 4+ years ago when I was in my late 50s, rheumatology finally recovered the SLE diagnosis & added sjogrens to my diagnosed secondaries. I'm responding well to a treatment plan of daily hydroxychloroquine 400mg + Mycophenolate mofetil 1000mg, with low dose 4 week pred tapers during neuro cerebral flares.

My feeling had been that 2 1/2 months recently on cefalexine 500mg for my first persistent UTI & kidney infection in 2 years wasn't simply down to being on immunosuppressive meds....so I found my consultant's recent comments re active sjogrens + low WBC & IgA intriguing...and I'm posting this question now to see if anyone on forum has had a consultant tell them pervasive sjogrens dryness can predispose us to infection...I'm particularly interested because I've had long term oral antibiotic treatment for osteomyelitis of the upper jawbone/sinus and although I've been considered 'clear' for 2 years, I'm keeping my eyes wide open as I start IV bisphosphonates for osteoporosis!

[Hidden]

You are on immunosuppressive yes? No wonder your immune function is noted as low?

[EOLHPC in reply to Hidden]

As usual with lupus, the answer is typically complicated...it's hard not to be long winded about this stuff.....but little by little I feel as if my drs & I are kind of figuring my version of this stuff out...and our forum has helped me get a grip in this so I'll try to explain:

I've been prone to several types of infection all my life, even during the 5+ decades when my infant onset lupus was in overdrive & NOT receiving immunosuppression treatment (other than during emergencies). And it appears I've always had sjogrens secondary to lupus, and also I've tended to have relatively low IgA & low WBC

My infant onset lupus was re diagnosed 4+ years ago, when I began responding well to systemic treatment on daily hydroxy. 400mg Hydroxy per day didn't seem to actually increase the number & duration of infections I got....but hydroxy also didn't stop me getting infections

I added daily mycophenolate at the relatively low dose of 1000mg in jan 2014. Since then the number of infections I'm getting hasn't actually increased, and hooray the persistent infections I've had have been characterised by less severe symptom onset (which is a huge plus, cause until now my uti+kidney infections have hit me like a runaway train) which I like a lot....I asked my drs whether I have mycophenolate to thank for this less severe infection symptom onset, and they say: yes, because daily myco means you're immunosuppressed....and I think: good, thank you myco!

So, I've been feeling as if I'm in a win-win situation:

Daily Hydroxy + myco are helping me feel better than I have since my 20s....I'm not getting a greater number of infections, and the infections I do get tend to give me less severe symptom onset

BUT, now this v lupus & sjogrens- experienced rheumatologist at my hospital's metabolic bone unit has thrown a wild card on the table: he thinks my pervasive sjogrens dryness + low IgA have always been the main causes of my predisposition to infections...so, he has made me take a long hard look at myself....and yes, I do admit that:

-my sjogrens symptoms have not decreased in intensity while I've been on daily hydroxy & myco + pred tapers

-my IgA & my lymphocyte reading have not improved while I've been on daily hydroxy & myco + pred tapers

So, this is why I'm beginning to think my drs need to focus on figuring out the cause of my predisposition to infections...and if the cause is related to my version of sjogrens: is it time to come up with a treatment to minimise the sjogrens?

So, I'm curious whether anyone here on forum has been told by their drs that secondary sjogrens can predispose us to infections (which links up with the question I posted earlier here on forum re taking pilocarpine for sjogrens)

I've posted a similar question on my sjogrens forum too....

[EOLHPC]

Oh boy, I've got to post even more now:

This morning I've been rereading wallace's brilliant The Sjogrens Book. For the first time ever, I'm actually understanding his chapter on Immunology....which, basically answers the question I'm asking here on forum + explains the immunological overlaps between SLE & sjogrens.

As a result i now actually think I understand why certain consistent aspects of my bloods results + certain aspects of the positive response I have to myco & pred = SLE & sjogrens with a predisposition to infection. I'm having a sort of eureka moment...ok, I'm still basically debilitated & vulnerable, but my meds inc antibiotics are giving me more quality of life than I've had since the 1970s.

Yikes....if you're wondering about this stuff, I can't recommend wallace's books enough

[AnnNY]

I was sick so much during the winters that I went to an immunologist, after I read there was something called CVID. I also had chronic tonsillitis until I had my tonsils out in my 20s and now I have chronic sinusitis. I found some irregularities in my immune system, (surprise!) like low natural killer cells, but nothing there was anything to be done about. But I also realized that had I had CVID, the treatment was getting infusions that would have been very problematic getting too and also very expensive. The resident told me that "they didn't work very well, anyway."

I think I posted an article here about people with lupus who have peripheral neuropathy have more illnesses than other lupus patients and more osteoporosis, so I was "ah ha!." That explains a lot. I have had a bug since the beginning of January that gets better and then comes back. Frustrating.

[EOLHPC in reply to AnnNY]

Anny, gosh: as always, you're v helpful....thanks so much...I've not heard of CVID, so I googled it just now: vvvvv interesting...so, I have plenty to mull over before I talk to rheumatology about all this at my 3 monthly clinic in March!

I must've missed that peripheral neuropathy etc article when you posted it: dagnabbit!

Am just getting over a 5 week bug myself: snap! Hope yours goes away properly soon

Thanks again & take care

[AnnNY]

Here's a link to the article again:

medpagetoday.com/Rheumatolo...

[EOLHPC in reply to AnnNY]

Wow: great: many thanks!

[Hidden]

It's a very good thread, Barnclown.

I have had my immunological workup a few years ago (well before I started my treatment). So I know my baseline immune function. It's hard to say in your case (without that baseline data) but it's most likely many of us got this feeble, useless immune system to begin with thanks to "Lupus" (sorry for the directness in saying so). Many of us seem to have a similar story much like yours.

It's difficult to say your current immuno-issues are the consequences from the autoimmunity (generally or specifically). Perhaps, we/ you were born with the set of dysfunctional immune system before it decided to turn itself against "self" one day. But my logic tells me your immunosuppressive has "some" role to play but please note that I am not placing any blame on your "treatment". I know you need some treatment and we all know there's a trade-off for any medications we take. Knowing you do a lot of research and you are in good hands, I'm sure you will be fine and your treatment will continue to help you. That's all I can say xxx

[EOLHPC in reply to Hidden]

I vvvvv much like the way you put all that

Makes TOTAL sense to me!

generalisations have a place, I guess, but I tend to approach them with a big pinch of skepticism...am much more interested in observing, spotting elements & looking for patterns

Yes, my vvvvv baseline US immunology bloods results are long lost because they would've been obtained in the 1950s -'70s when my infant onset lupus was first diagnosed & treated....not sure what tests they ran way back then & how definitive those were....but at least we do know quite a lot of details re my toddler, childhood & teen medical history (all of which were so credible that in 2011 my v SLE experienced head of rheumatology was prepared to begin treatment for SLE based on clinical examination & history even before baseline bloods, cardiac lung function and nerve conduction results were in...but bloods were taken & FBC + full range of baseline immune system tests done before i actually took any lupus meds treatment). And from my 20s onwards the nhs kept records....and during those decades I was regularly in & out of the gp surgery & the local hospital, so that means even more historic test info on record. when I was finally began to be re-diagnosed with lupus in 2010, my gp printed off my full bloods results record, which has helped us quite a lot. And now we also have 4 1/2 + years of bloods results including one year of detailed monthly myco monitoring results + the results the BILAG rheumatology research team hold from tests at my regular BILAG reviews.

Your questions, comments & encouragement mean a great deal to me....you always help me feel as if it's worth putting effort into continuing to try to understand this life of ours...and my motivation does ebb & flow!

Thanks so much

Take care

XO