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Inner peace
Hi y’all. My name is JoAnnie. I was diagnosed on May 2018 when I was 66 yrs young. In my case, age had nothing to do with me getting this disease. I was prescribed Hydroxychloroquine by a Rheumatologist for the relief of muscle spasms. Unfortunately for me, I didn’t looked into the many side effects of this medication and within 3 months, I ended up in the ICU, feeling like a rag doll, and not fully aware of what was happening to me. I have been through three MG crisis and many different medications that eventually stopped working for me. Now I’m taking Zilbrysq subcutaneously every day and so far, it’s working. It’s been a rollercoaster ride, but I’m looking forward to the day for all the bad, illnesses, death and suffering to be gone. Rest assured that will happen pretty soon. (Rev. 21:4). In the meantime I’m taking care of myself the best I can do as I put my faith and trust in Jehovah God. Wish y’all the best, hoping everyone can get the daily inner peace we all need.
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2 Replies
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Hi JoAnnie! Thank you so much for sharing your journey with us. I actually also first experienced MG symptoms and was diagnosed after being treated with hydroxychloroquine for what they believed was lupus.
I can only imagine how difficult it must have been with those challenging experiences in the ICU and several medication changes along the way. It’s fantastic that Zilbrysq’s been working for you.
I admire how you prioritize your self-care, your faith, and maintaining that inner peace. Wishing you all the best on this journey, and I hope you continue to find the strength and support you need. Take care!
Jodi, Team Member
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Hi Jody. Thank you so much for responding back to my input on our illness. I have been dealing with an ugly rash on the front of my thighs, stomach and arms along with breathing problems. As per a dermatologist, my neurologist and pulmonologist, they felt those issues derived from Zilbrysq. It’s been hard but there’s always a solution for everything. No longer taking Zilbrysq. Now I’m taking Ultomiris infusions and from the first session, I’m feeling great. They start you with one 30 minutes infusion, the second in two weeks later and then every 8 weeks. I’m hopeful this will work for me. My strong faith gives me the inner peace and strength to endure. Wishing you the best. Take care, stay safe.
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