IVIG experiences to share with a newbie?

I'm being put on IVIG in the next few weeks as a trial to improve my SLE but I don't really know much about it. The Wikipedia article is lacking and I just wanted to get feedback on side effects and just how it feels and what it did for those of you who've had the treatment. Thanks in advance for the help advice and knowledge.

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  • 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 so much for sharing your experiences with me, I really appreciate you taking the time. Your explanation of the procedure was really helpful as well as hearing how the treatment has helped you. Hopefully it'll do the same for me! :)

  • No problem at all.Suddenly struck me when I read my reply, that I was so busy being rational etc, that i forgot to say that it sounds like you've a really grim time of it-being ill & diagnosed at such an early age. It's just that you sound so mature & well adjusted to coping, that it's hard to imagine growing up with this rotten illness & all the complications.. So take heart, you're doing brilliantly & I really hope you benefit from the ImGs. :) C

  • 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.

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