Preparing for IV zolendronate treatment to start soon 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 + 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 sjogrens 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!
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Thanks Louise! You put it so well: clearly & concisely.
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.
It'll be interesting to see how others may reply to my question here.....but between the metabolic bone unit rheumatologist, you & Wallace: I think I've got it!
Hi I have a different take on it ...I suffer like you from Sjogrens and lupus Hashi's .APS, Fibro lichen Planus and more ! about to embark on treatment for osteoporosis ,as I've also just been diagnosed with that! Like you After breaking both my arms at the same time ! And then one week after taking the slings off ..broke my left again in a different place! Such joy!!
I also have self catheterised for many years .with the gift of Constant UTIs and the necessity of antibiotics .which I am ,like your self intolerant/ allergic to along with most other drugs and foods ...( there is one I take which is the lesser of all evil effects ..but I am unable to speak or partisapate in the world for the time I am on them....
I was in a terrible cycle of infection ..antibiotics ( which make me Ill) for 2 weeks out of every month .i was never well or on my game...I was told to look at Erica Whites website re candida she was describing myself! ..and started her candida diet she also has a book ..Anything to help myself.. Things improved but then my thyroid went haywire ..
I went to a private Dr in London specialising in integrated medicine ..who said I had hashi's ... And leaky gut / gut diabosis I had blood tests re what foods I was intollerant to ..had lots of supplements ( which I found I was intollerant to also ) ...the upshot is ..he was never able to sort my thyroid out ,he was not in possession of all the puzzle pieces ( lupus and the rest followed the next year ) but with diet along with supplements he was able to improve my health ..as my UTIs have been few and far between..
I'm still catheterising ..
You are in a bad cycle of UTIs and antibiotics ...( maybe even steroids) which feed the bacteria in your gut ..I took profalactic antibiotics for two year at one stage , to stop? UTIs this was more a hinderance , as they said I didn't have a uti ,I did but was not showing in urine tests , this happened so many times ..and was hospitalised On stronger antibiotic drip ..
You need to take a lactobacillius tablet / capsule not a yogurt drink containing similar ..
Erica webbs , site is informative ..you might also be able to catch the webinar on thyroiduk .org forum this week end ..discussing the Gut ..
My treatment start 5years ago ..it takes along while for ideas to become accepted and more mainstream ..by being overrun with the bad bacteria grown by antibiotics and medications your body is struggling ...its systemic in your body ..
Sorry that your not feeling good at the mo ..I just wanted to say what helped me ...and hopefully might improve your quality of life ..
Thank you v much Donna! You've been through an awful lot.
I will think all this over...you've given me plenty more food for thought...lots to talk to rheumatology about at my 3 monthly clinc in March...take care...I hope things get better for you soon xo
An educational site providing all you need to know for fighting candida, in a ... My name is Erica White This site is all about candida - and how you can beat it ...
Thanks again Donna! I'll take a good look at this link....my feeling has always been that my mind has to stay open to a possibility of candidiasis, even though, over the decades of my health saga, I have never had any of the symptoms or conditions that are most usually clearly related to candidiasisover. But I do have a sister who has been affected by candidiasis....years ago, she first got me going on candidiasis lifestyle management (diet etc) and she always urges me to make sure my drs monitor me in case candidiasis is playing a part in my health picture...so, I have always told my drs & dentists etc they must check me for any part candidiasis may play in my health probs...and so far there has been no evidence of candidiasis has been found in my case (on both the outside of my body in my mouth/throat & systemically). Even so, I ask my drs & dentist etc to continue to watch me for candidiasis, and meanwhile I try to stay up to date re candidiasis research...so you're helping me a lot by telling me your story and giving me this link. I'm v grateful! Take care xo
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