Rejection letter from Janssen CarePath re Spravato

I am in the study for vagus nerve stimulation. It’s been one and a half years since the implant with no relief yet for depression. The physician who has the study for the VNS also provides the Spravoto threatment at $40,000 a year. Of course the $40,000 a year really put me off. But my depression is often just paralyzing. I almost feel as if I am in a small box with no door or windows. I just keep telling myself that I can endure it. It is the only way to survive it. It will go on for 4 to 6 hours. You are the second person I’ve heard from who has taken this Spravoto. Has it been helpful? The drug seemed very scary since the side effect was an LSD trip (?). What is your experience?

Good morning. In my humble opinion, the "LSD" comparison is highly exaggerated and a stereotype. In July 2019, I was the first patient in Fayetteville NC to receive Spravato treatments. I did not experience any adverse complications. I would have continued, but in March 2020, the provider yanked the rug out from under me. My "theory" is that the REMS protocols were not being met and he was "forced" to stop.
I had reached a maintenance level which actually lasted for 5 months. In the meantime, it took 16 months to find a treatment center who accepted my insurance...not even close to $40 k...more like $40.00..It varies.
The new REMS treatment center has strict compliance: no white light, no TV, and complete supervision with personnel in the room with me during the first phase--40 to 60 minutes.
Please keep in mind @eczarniecki that because each person is so different from another, I can only express my experience. Once the Spravato is administered by me--a Nasal spray--two sprays--one in each nostril, 3 times, 5 minutes apart, the effect is gradual. I'm at 84 mg. In 2019, I started at 28mg.
The way I feel during the treatment reminds me of when I was a kid, spent the day at an amusement park, and once in bed for the night, felt the sensation of riding the rides...not the horrible wrenching from the roller coaster-- more gentle--like swinging or gliding on Dumbo. If I keep my eyes closed, I daydream. If I stare at the ceiling, I feel like I'm 8 years old and wearing my Mom's prescription glasses.
I HAVE NOT EXPERIENCED ANY WEIRDO HIPPIE TRIP...lol
The medication has to be carefully titrated over time (months) and monitored. They use timers and check my BP on schedule.
Some days I'm quiet, other days conversational, other days I write in my journal. I bring a pillow & blanket, and for after the treatment a protein drink, water & a Granny Smith apple.
Spravato has to be taken in combination with an effective antidepressant. We're still working on that. Suicidal thoughts have significantly decreased. My depression has decreased, but I'm at a disadvantage because my thyroid levels are way off and my thyroid problems affect everything, including my mood. However, I think there's improvement because my thoughts seem to be ok. I think I'm coherent...long winded is just me.
Thanks for asking. If you have any questions, I'll be here.
BTW...I dodged a bullet in 2004 when Medicare refused to cover VNS. And I've decided that I won't do Transcranial Magnetic Stimulation in the event Spravato stops being effective. I appreciate contributing to science, but my brain is too valuable. I've received treatment: pharmaceuticals, ECT, and therapy/counseling ( body mind, soul,) for 30 years. I earned my Bachelors and Master's. I've expressed myself creatively... I'm 66. I don't feel like farting around anymore with guess & check. In 2006, I had cancer. After the surgery I felt great--usually it was very difficult to come out of anesthesia. What was the change? Ketamine was part of the chemicals combined to put me under.
Ketamine, esketamine, Spravato.
This morning my first thoughts: my depression imprisons me...only worse, the doors and windows are unlocked and I have no desire to leave.
And then I checked my email and I'm so glad I did. Thank you!