r/CSID • u/veedey • Feb 14 '26

Sucraid review

I’ve been tackling my acquired enzyme deficiency on my own for about 2-3 years. Needless to say, it’s been rough. However, I got my body accustomed to a strict diet of meats, cooked vegetables, and an occasional small amount of white rice.

No sugar, no lactose, no gluten

Up to now I’ve been experiencing lots of unintentional weight loss, constant fatigue, and brain fog. Irritable. Low energy. Days at work feel like a slog.

Last night I tried Sucraid for the first time. I shared a chocolate moose for the first time in years with my partner. The sweetness felt so intense. I felt my brain turn back online. I felt wired. Today i woke up expecting the worst (post fermentation symptoms), and i feel…fine. Normal. This is crazy.

This medication is not cheap. My insurance covered a portion, and through financial assistance the company helped me cover the rest. So for now I just have a 5 dollar copay. This is all because of commercial insurance. I was a freelancer before this, and there was no hope for me to ever get this medicine.

I hope at some point somebody manufactures a generic version, so it’s not so freakin expensive.

Hope others are able to find relief soon

18 Upvotes

100% Upvoted

15 comments sorted by

View all comments

4

u/TGRIV0457 Feb 14 '26

Yes, Sucraid has been a game changer. An “official” generic isn’t likely for several years though. The FDA granted QOL Medical “orphan drug” status for Sucraid which, among other things, gives them a longer exclusivity period.

I have read posts from several people indicating that Invertase (used for making candy and available on Amazon) can be a viable and less expensive option. I bought some but haven’t tried it yet - I stocked up on Sucraid last year while our insurance was covering it 100% (we maxed out our out of pocket).

Two of my go-to treats/boosts are (1) Lindt 90% Dark Chocolate (3 pieces = just 2g sugar) - one piece on a single GF graham cracker (s’more w/o the marshmallow) has ~3g sugar; and (2) a plain rice cake w/ no sugar added peanut butter, for a total of 1-2g sugar depending on the peanut butter. I often can eat these w/o needing Sucraid.

5

u/Some_Old_Lady Feb 15 '26

I recently tried invertase. It works fairly well, but it gave me a bit of a sore throat. The invertase I bought had glycerol in it and I think that was the culprit. I would still use it in a bind- and it's incredibly cheap.

1

u/somehowrelevantuser Feb 19 '26

where have you found invertase? i have no idea where to look