Thank you so much for posting about your positive experience with Dupixent. That is what my D started. I’m so happy for your family. I hope my D has similar positive results.
One excellent thing about Dupixent is the copay assistance program.
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Prior to Dupixent getting approval for EoE, my was prescribed Symbicort to swallow but insurance denied coverage and we exhausted appeals. We were trying to figure out how we could manage to afford it without insurance, and then thankfully Dupixent was approved. That also required an appeal, but it worked.
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I also got liquid Budesonide for nebulizer, that can be swallowed. In this way, I guess my respiratory issues are helpful because insurance covers these meds for those and they don’t know I swallow it!
I am surprised that even with a definite diagnosis (biopsy?) your daughter’s insurance doesn’t cover swallowed steroids.
My copay is $286 though…
Yikes! That’s a big copay.
Someone at the insurance company who was sympathetic about what my daughter was going through gave us a long list of all the conditions which would allow her to get a steroid inhaler for swallowing, but she had none of them. We ran it by her doctor’s assistant who checked with the doctor to see if D would meet the criteria to get any of those diagnoses, but no. They were all lung related medications the doctor who did the biopsy and is managing her care is a GI doctor. I don’t know if her allergist would have had more leeway in finding an allergy-related diagnosis.
Her allergist prescribed an inhaler early on when her throat was swelling and felt like it was closing during the first month after the vaccine but at that point no one knew what was going on, and EoE was never suggested until we saw the GI doctor. Perhaps if one of the doctors she saw at that time suggested swallowing instead of breathing it in, it may have helped. She was on oral steroids prescribed by an ENT who scoped her throat, and benedryl, but they weren’t very helpful.
The GI doc didn’t prescribe swallowed steroids?
Somewhat more detailed (than galleri.com) page on the Galleri test from a third party: The Galleri Test for Cancer Screening – Cleveland Clinic
More technical description of the Galleri test from sponsors of the test: https://media.nature.com/original/magazine-assets/d42473-020-00079-y/d42473-020-00079-y.pdf
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Symbicort only. But then insurance denied coverage.
None of the information on the Galleri site, including FAQ’s, answers my question about whether it detects recurrence/spread. I tried googling it and could not find it. Those of us who have had cancer (I resist the term “survivor”) are interested in a way to detect recurrence/spread early and at least for breast cancer, there isn’t one.
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As far as I understand the test should be able to detect recurrence. If somebody is cancer free there should be no cancer-specific DNA in the blood stream. If such DNA is detected that means that cancer has recurred.
I know that test is quite expensive, but if I would be concerned about recurrence, I’d get tested on a yearly basis.
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We really need this to be a success…
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This is promising.
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