Hey…gotta love being a Sjoggie. My latest trick is to be running a little low on the IgM scale. Doc is sending me to an immunologist for further testing and talking about possibly doing rounds of vaccines for protection. I’m not super worried yet (I am insanely careful with it being flu and stomach bug season anyway). Wondering if anyone else has been through an assessment for this. Would like an idea of what to expect.
Hi. I’m just seeing this post you made early in the year. I haven’t encountered this (yet) but wondered what came of it with you. I’m reading terrifying things about elevated B-12 levels and recall that when I was first diagnosed and hospitalized with sjs, my B-12 AND folate levels were bizarrely high – it’s usually the reverse for Sjoggies. How did you fare?
Hi…well I had a full work up and at the time they decided I needed a round of pnuemovax 23. Out of sheer coincidence, I also had to see a pulminologist around that time for the dry cough (and some past scarring on the lungs). He did half of the shot about 6 mons ago. I go back in in about 2 weeks for the other half. In the meantime, my Ig levels have returned to normal on their own, thankfully. Rheumy said that it can happen sometimes and as long as they come back up on their own, its no big deal. The shot was just an added safe guard.
As for the B and D stuff, I run low so I do supplements and that covers it for me.
Apparently Sjoggies are just the oddities of autoimmune. LOL
Also…try not to be terrified by other people’s stories. We really are all different on the paths the syndrome takes and how we react to treatment. Your journey is as individual as you are, so try not to worry too much about anything that isn’t happening for you, if that makes sense.
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You’re so right, and while I know all too well how individual the journey is, I have to remind myself every so often. You’re always so reassuring – were you a counsellor at some point in life (lol)?
LOL. Thank you. I am actually a mental health counselor…the first many years of my work experience is working with traumas so it equipped me kinda well to deal with this went it hit.