@waif I am on day 4 of the steroids. I've definitely seen improvement in some of my RP-like symptoms, but now that I am tapering down off of them I'm noticing the symptoms going back to their baseline again. My response to the steroids is another check in the column for it being RP. If I indeed have RP (I'm feeling 90% sure I have it at this point) then steroids are about to become a part of my life forever most likely
Along with drugs like Methotrexate, etc. And it means likely my life will be shortened by the disease as it considered a severe, progressive disease. Just less than 10 years ago 5 year survival rate was 75% and the 10 year survival rate was only 55%. This has improved some though in recent years due to better drugs for treating it.
Even though the steroids improved my symptoms some and likely mean I need to keep taking them I want to hold off on continuing them until after I've been seen by the ENT, have dynamic CT scan done of my trachea/throat, and have completed the pulmonary function testing, and any other tests that need to be done. 50% of those with RP have trachea/throat involvement (this is biggest risk for death from RP) and I have the symptoms of RP trachea/throat involvement so I want to make sure it's evaluated thoroughly and soon. I have not heard from the ENT scheduler so I will call tomorrow to make the appointment.
So far I'm finding great support and information in the Facebook RP groups. A few seasoned RP'ers are convinced 100% that I have RP based on my photos and symptoms. My presentation is very classic RP they say.