Mycosis Fungoides 04 Many Opinions

Many Opinions

With Humira having been huge failure, then next try was Tremfya. We're now up to March 2019. Tim has been dealing with this since mid-2017 ~ itching, scratching, flaking. I truly don't know how he manages. I would be going crazy. It is a constant thing now to be scratching or applying creams and ointments. I think it has become an unconscious reaction at this point. But, they tried Tremfya on 03/19/2019.

So Tim has had to endure a ton more biopsies and they just can't seem to figure it out. The doc had Tim come up to a different office where a ton of doctors and medical students from Wright State came in to take a look and offer opinions. Hmmm, in hindsight, we should have charged admission. We could be rich! Keep in mind that while all of this happening, Tim is still working. He works nights ~ a 10 hour shift, 4 days a week. But when you factor in drive time and late planes, 10 hours is more like 12 or more. He leaves at 6:00 p.m. and gets home around 9:00 a.m. if he's lucky. So all of these appointments are after working a long night. And then that means very little sleep for the next night. Once he slathers himself with all of the creams and ointments, he manages to get about 5 - 6 hours of sleep - maybe. Probably another contributing factor to his body not responding to treatments.

So Wright State didn't offer any great insights for the dermatologist and Tremfya is not working. Time to call in the big guns.... 

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