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World According to Lupus
434 members32 posts

My story

Use to be a busy body working very hard under extreme circumstances, very long hours and very stressful.I always put every one else before me.I started to get sick 4 yeArs ago -after being for 4 unsuccessful IVF therapies got what they say was glandular fever , with systemic vasculitis and a form of encephalitis(all in one month.) I fully recovered and got naturally pregnant with identical twins 4 month after the encephalitis episode.Babies was born prematurely on 31 weeks.Stayed in NICU for 6 weeks.after 6 months Had a traumatic death in family with family issues and 4 months after that I started to get sick, pain , very tired all the time.Swollen feet and legs, doctor send me for blood work and they done a kidney biopsy - diagnose me with Glomulere nephritis.Blood work neg for Lupus.High dose of cortisone meds and almost a year later proteiene levels much better and felt better we had yet again a traumatic death in the family with a huge amount of issues regarding this again.I had stopped meds for almost 5 months when i wanted to get pregnant again, they did some blood work ANF low positive with High titter.They diagnose me with Lupus SLE i had extreme pain in joints chest and muscle diagnose me with fribriomalgia. Doctor put me on cellcept 509mg x2 daily havent had a effect still a lot of pain tiredness, lack of sleep, brainfog.Recently feet legs and hands are swollen again protein and Albumien levels very low.Cholesterol very high, they put me on cellcept 1000mg 2xd feel better.......for now.

1 Reply

At this point, I applaud you for everything that you have been through and surviving so many ordeals. I was on Cellcept but unfortunately it did a number on my stomach and I discontinued it. I'm glad that it is working for you, which it seems to for most people. :) On Cellcept pregnancy is not recommended, I have heard a 2 week old baby having to get nails of some sort put into its spine after being born from a mother that took cellcept. The best type of contraception are non-hormonal ones. You have two beautiful twins, learn to focus on your own health and taking care of them should come easy after that! They will thank you in the future and of course they want a healthy mom!