Hi everyone,
Male, 173 cm, 65 kg, 29 years old.
I’m posting anonymously because I honestly feel overwhelmed and scared, and I’m hoping to hear from people who actually understand tattoo-associated sarcoidosis.
I’ve been dealing with tattoo sarcoidosis/granulomatous tattoo reactions for about 2 years now. It started in one tattoo and has gradually involved nearby tattoos as well. I continue to develop nodules/granulomas despite treatment.
So far I’ve been through:
- Dermovate (clobetasol)
- Prednisolone
- Adalimumab
- Dapsone
Some treatments helped temporarily, but the disease still feels active. Sometimes I feel like it’s progressing rather than calming down.
What worries me the most is:
- not knowing what to expect long-term
- whether this ever truly goes away
- whether active disease for this long means it will become systemic
- how many people actually reach remission
- whether the tattoo eventually becomes “inactive”
- and honestly just the uncertainty of all of it
I’m especially interested in hearing from people who have had:
- tattoo-associated sarcoidosis specifically
- black ink granulomas
- long-term active disease
- biologic treatment (Humira/Infliximab etc.)
- periods where treatment seemed ineffective before eventually helping
Some questions I’d really appreciate hearing experiences about:
- How long did your disease stay active?
- Did you eventually reach remission or stability?
- What treatment actually worked for you?
- Did anyone improve after initially failing Adalimumab?
- Did the granulomas eventually burn out or stop appearing?
- Did anyone have anxiety from not knowing what the future looked like?
I know nobody can predict my exact outcome, but I’m struggling a lot mentally with the uncertainty and would really appreciate hearing real experiences from others living with this.
Thanks 🙏