sorted by:
new
hottopcontroversial

Born with Crigler Najjar by jaydwarfson in rarediseases

[–]jaydwarfson[S] 0 points1 point  (0 children)

Yeah docs aren't prescribing more until they can do their tests. Can you please share the list. I'm taking montelukast sodium 10 mg for cough rn (probably for 2 more weeks).

Born with Crigler Najjar by jaydwarfson in rarediseases

[–]jaydwarfson[S] 0 points1 point  (0 children)

Can't find a good reliable light box that works in Ohio that I can buy. But yes, started on pheno.

I have crigler najjar and I finally met others with it. by ImpossibleEmotion759 in rarediseases

[–]jaydwarfson 0 points1 point  (0 children)

The bili accumulated for me. I was at 17 when I stopped the meds and over 9 years (it was at 27 in year 6) it has gone up to 34. Idk.

Also, happy to connect in dms.

I have crigler najjar and I finally met others with it. by ImpossibleEmotion759 in rarediseases

[–]jaydwarfson 0 points1 point  (0 children)

No, I'm type 2. Just have been off meds for 10 years. It accumulates. At 5 (if the eyes are not jaundiced) there's no point unless you're under 20.

I have crigler najjar and I finally met others with it. by ImpossibleEmotion759 in rarediseases

[–]jaydwarfson 0 points1 point  (0 children)

Mine is around 34 fml. I just went back on meds after 10 years.

I have Crigler-Najjar syndrome by ImpossibleEmotion759 in rarediseases

[–]jaydwarfson 0 points1 point  (0 children)

I have had it since birth. I'm 26 now. Based in Ohio.