IVIG experiences to share with a newbie?

Hello there IrishLupie, I'll try not to waffle on. I'm from Belfast & tho I'm guessing about 20 yrs older than you, I've a fair bit in common with you- regarding diagnosis & treatment etc. I was tentatively diagnosed with S.L.E back in 2000, after a stormy 'start'- I had a lot of odd seizures- looked exactly like 'proper' epilepsy but not losing consciousness. Also joint/ muscles problems & a much longer history of rashes & Raynauds.

Diagnosis changed between Mixed Connective Tissue Disease & S.L.E as Docs always say there are elements of Dermatomyositis & Vasculitis with a pinch of Sjogrens.

Anyway, I'll not bore you with all the delightful things that progressed since, but I've been on steroids, min 15mg, for about 12+ yrs & the usual immunosuppressants/ anti inflammatories/ heart meds & bronchiectasis meds for too long. Too often in hospital..

So my rheumatologist started me on Rituximab about 3 yrs ago as well, which I really do think is great (my only problem is being 'fit' enough to get it..). Also about a year prior, he gave me 2-3 blasts per year of IV immunoglobulins. I definitely noticed the difference & I now take them every 3 weeks, since Jan '14.

Sometimes they give them to S.L.E patients who are fairly unwell to almost build them up, or occasionally it's because your IgG, IgM or IgA levels are a bit low. It's a hospital procedure- the nurses do Obs, give you a blast of steroids & usually anti histamines, 1st couple of times in case of reaction. Then put a IG drip up for approx 3-4 hrs (max prob..) -depending on your dose. They check you pretty regularly & common side effects, for me, are headaches & possibly some nausea. Also pretty tired after for a while. But I definitely find I'm livelier (?!), more positive & much more resistant to infections. Certain Lupus symptoms are clearly dampened & no major long term side effects commonly reported from what I've heard/ read.

So sorry for too much info- hope this is of a bit of interest. Feel free to contact me directly. Good luck with the new treatment.

Take care Claire

Thank you. It's interesting you raise my age actually because I think that being diagnosed so early allowed me to adapt and for it to become normal at an age before I could really think 'Woe is me'. I dunno if that would hold up to scientific analysis but I do have some friends diagnosed later in life and from what I've seen the later the diagnosis the harder they find coping which I find really interesting from a psychological point of view. Thank you again for all your help and I with you continued improvement and good health in the future.