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My husband (29yo) was diagnosed with WG/GPA a few weeks ago. Our story in a nut shell: Near the end of November 2016 he had a light cough that was disregarded as we had all had a bout of a cold in the house. After 2 weeks, he began feeling really strange-sick, he couldn't explain it, and a few days after that he woke with extreme shooting pains in his chest. Fast forward to finding out he had two large masses (nicknamed the tennis ball and the golf ball) in his lungs. After an invasive biopsy (VATS), a lobectomy, and a week of anxiously waiting, we were told he has WG, and not cancer as previously suspected.
He is currently on 60mg of Prednisone each day and has completed 1 of 4 Retuxin treatments. I have left his previous pain and suffering out of this but my heart is heavy seeing him suffer the way he has. He is slightly better now than before. I know that we are actually on the very blessed end of this "disease" as it has not spread to any other part of his body (it is only in his lungs) but he is struggling so much with dizziness, insomnia, constant pain, difficulty breathing, constant nausea and heartburn, headaches, chills and cold sweats, incredible joint and muscle aches, and more. He takes ibuprofen now for pain management, that's all his Rheumatologist feels he needs now. I am in desperate need of advice and encouragement.
What can I do to help him feel better/offer relief?
How long until he sees some relief from the treatments?
What happens after the Retuxin? New drugs?
What does a life with WG even look like?
I'm doing my best to stay strong and positive for him. My heart breaks for him inside though. Any advice/suggestions/experiences are so appreciated. ??
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