IVIG

[Megansheart]

I am wondering if anyone here with SS has been treated with IVIG? If so, what sort of benefit did you derive from it.....such as, did you have an improvement in symptoms, reduction in your pain levels, slowed progression of the extraglandular manifestations?

Were you seeing a Rheumatologist at a large public hospital? What were the deciders for you being eligible and who organised the treatment initially?

Sorry for all the questions!! 😏

[Tally]

Iam sorry have not heard IVIG

[EOLHPC]

My primary is infant onset SLE, which went without daily systemic lupus meds until 5-6 years ago because the diagnosis got lost when I moved to the uk at 21.  So the NHS spent 40 years diagnosing & treating secondaries + treating complex persistent pattern infections quite effectively before finally spotting the SLE underlying everything.  By then my sjogrens had been active but undiagnosed for almost 15 years.  And by then I was seroneg for lupus & sjogrens, but with clear history & symptoms & other blood elements that filled the criteria for both conditions.  For the past 5-6 years, I've been responding vvvv well to the combined therapy immunosuppression treatment plan that has evolved to damp down my chronic symptoms.  

But last year the NHS realised I also have an early onset immunodeficiency, present before I started on lupus immunosuppressive meds.  So rheumatology referred me to immunology where hypogammaglobulinaemia (G, A & M) + lymphopenia were diagnosed, and detailed profiling of what amounts to a PID (primary immunodeficiency).  Immunological investigations are still active but they tell me my degree of hypogammaglobulinaemia-related problems is not yet severe enough to qualify for IVIG treatment.  But, I'm glad to know IVIG is there for me if my condition deteriorates

I do know a few patients on IVIG for various reasons.  One was misdiagnosed with a severe neurological condition, reacted very badly to IVIG and, over a year later, is still recovering from the infusion.  Others find IVIG generally very helpful: some self inject, another sticks to infusions.

I hope something in there is useful to you.  i hope you get more replies...i'm also very interested in the questions you're asking: there seems to be a v limited supply of IVIG here in the UK, so prescribing it is strictly limited to specific criteria

🍀🍀 coco

[autowhen]

I know someone who has IVIG every 8 weeks for Sjogrens neuropathy. The treatment makes them feel rotten for a week, then better for 5 weeks before going downhill feeling gradually worse til the next treatment. It does recover sense of taste and smell, decrease stillness in joints, so definitely helps, but does not last long.