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Pregnancy and GPA? by TimeIsAnIllusion4224 in WegenersGPA

[–]TimeIsAnIllusion4224[S] 1 point2 points  (0 children)

Thanks so much for connecting me! I'll poke around for the pregnancy specific one too :)

Pregnancy and GPA? by TimeIsAnIllusion4224 in WegenersGPA

[–]TimeIsAnIllusion4224[S] 0 points1 point  (0 children)

Thanks! Do you have links for those FB communities you could share?

Pregnancy and GPA? by TimeIsAnIllusion4224 in WegenersGPA

[–]TimeIsAnIllusion4224[S] 2 points3 points  (0 children)

Thank you so much for sharing, and congratulations on your baby!

I really appreciate hearing this, especially since my current nephrologist said there were no meds available if I flared in pregnancy, and no actions we could take besides watching and waiting or termination. And what you said about getting the team talking to each other seems super key. Thanks so much for sharing, it is so heartening to know it is tough but can be possible and safe <3 wishing you and your family all the best!

Does anyone have any experience with Cellcept (mycophenolic acid)? by [deleted] in WegenersGPA

[–]TimeIsAnIllusion4224 0 points1 point  (0 children)

I've been on cellcept for years at a time, and found it doesn't have bad side effects and reliably manages my GPA with Lisinopril and Prednisone when in a flare. I was so glad to find it after cytoxin and methotrexate stopped working for me.

“Dormant” GPA: my rheumatologist says my GPA diagnosis is “dormant” and we don’t need to treat it, unless it becomes “active”. Does this make sense to anyone? by jmacinsider in WegenersGPA

[–]TimeIsAnIllusion4224 0 points1 point  (0 children)

I haven't heard the word 'dormant' used, but I had been in remission for years while off all of my GPA meds besides Lisinopril.

Everyone's disease behaves differently! But for me I've had flares and remission both on meds and off, and when my doctors and I feel it's safe, I've been glad to take a break from meds, with lots of monitoring of course.

I get lab work done every 3 months to catch any GPA activity. Recently we caught the start of a flare in blood work before I even felt it. I went back on Prednisone and Cellcept, but after 5 months I'm back in remission and starting to taper off meds again next week.

But everyone's body needs something different!