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45 finally diagnosed with CF, treating with Alfytrek: Anyone else?

Posted by combineguru @combineguru, May 19 8:02am

I was finally diagnosed in March at age 45. I'm 5 weeks in with Alfytrek. They told me it would get worse before it gets better. Some lung improvement has happened. I can tell it's trying to drain my sinuses. The fatigue it really tough and now my lymph nodes in my neck hurt probably from my ears trying to drain. Anyone else experiencing this and is there light at the end of the tunnel?

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helen1000 | @helen1000 | Jun 3 8:15pm
In reply to @ckscoville "@helen1000 I appreciate your concern. My macrocytic anemia continues to be a mystery. I've seen the..." + (show)
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@helen1000 I appreciate your concern. My macrocytic anemia continues to be a mystery. I've seen the hematologist at Mayo and I've had a number of tests, etc., to determine the cause. I take heavy doses of B12, Folate, and Iron daily, and blood tests have revealed no shortages of those in my system. My bone marrow was also checked. Currently taking periodic injections of retacrit to boost my hemoglobin, but I'm experiencing some unpleasant side effects from those injections and my anemia has not yet improved. In time, however, I remain optimistic that the Mayo doctors will find the cause of my anemia as well as the right treatment for it. I would love to have more energy!

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@ckscoville Yes Pug, Mayo clinic is the best hospital! I also went to Mayo Clinic in MN to see Dr. Timothy and he is so impressive! My pulmonologist in NYU is the CF director Dr. NicoleLapniel,. She is so kind and so professional. If you want, you may seek a second opinion from her as well! I sincerely hope you will get better soon!!!

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