Litfulo + Dexamethasone gave me everything back in 3 months
TLDR: Started 4mg/2x week of Dexamethasone, aka Oral mini-pulse (OMP) regiment, on February 2nd. Then after insurance cleared it, I started Litfulo on February 28th. Reached SALT >95 first week of May. Second picture shows me on Mother's day after my first haircut in 3 years!
I had lost all my hair previously in high school, and did a similar (and IIRC, slightly more aggressive) OMP regiment. Of course, that was in 2021-2022, just before Olumiant was approved, so when I came off oral steroids, I started noticing new patches within months. I was able to get on Olumiant after it was approved, but all it could seem to do was maintain my hair and had basically no impact on my bald spots (SALT ~80). I was still constantly worried about my bald spots and I hated taking photos that showed anything but the front of my head.
After about two years on Olumiant, my blood work started to decline. I don't recall exactly the marker, but I believe my red blood cell count was falling (anemia). I did notice fatigue and light-headedness, but I had associated it at the time with my diet. With this, I decided to come off Olumiant because I had good facial hair (then aged 19) and figured I could rock the bald+beard look. Well, it turns out that Olumiant was actually doing a TON in preserving the hair I had, as I lost all of my facial hair and quickly moved to Alopecia Totalis.
This wasn't nearly as devastating as when I was 14 and first developed Alopecia as I had built self-confidence in many other places. But over the winter I was visiting my parents and spent probably too much time looking at old photos and seriously started to miss having hair.
So in early January of this year, I started researching the current state of Alopecia treatment, and was shocked to discover how far things have come. I knew I couldn't be on Olumiant due to the anemia, so I started exploring Litfulo. The issue: my Alopecia was far too advanced for Litfulo to be cosmetically helpful within a year. Then I had an idea: I knew I'd respond well to an OMP regiment, but that I can't stay on it for long. What if I use steroids to achieve the regrowth quickly while allowing Litfulo to "accumulate" in my system and hold the line for when I come off steroids? I ran the idea past Gemini, and discovered this is not an uncommon clinical practice, but there were few case studies (I can't find even one) published about this technique.
I decided to meet with my Dermatologist about it, and she was completely onboard. The dexamethasone script was quick and easy, while the Litfulo took longer due to insurance. I also used Kirkland Minoxidil once daily (now at twice a day). Within literally 3 weeks (Feb 23), I noticed peach fuzz on my eyebrows and the faintest vellus hairs on my scalp. A month later, and my eyebrows were filling in with dark hairs, and peach fuzz continued building on my scalp and beard. Now in May, with nearly total regrowth, my friends ask me if I "took a trip to Turkey".
Obviously, you can't stay on steroids forever, so my Dermatologist switched me to Prednisone 30mg for 3 consecutive days once a month for 6 months, which is apparently a very low dose. For me, the million-dollar question is "Can Litfulo maintain my hair even when I come off steroids completely?" I figure I'll get a good sense of this while on the Prednisone OMP regiment, but I guess I'll have to update y'all next year!
Let me know if y'all have any questions!