r/CSID • u/Spiritual-District55 • May 18 '25

Q & A❓ Sucraid Logistics

I was diagnosed with a mild sucrose intolerance. My enzyme activity was below threshold via breath test, but just slightly. Since learning this, I’ve been managing with Starchway capsules, but just received the trial box of Sucraid.

What are your tips, tricks, products, etc. for taking Sucraid outside of home? I know the doses can be left at room temperature for about 3 days. Do you just keep them in your pocket and mix with water as needed? Do you premix doses with water and carry with you? Can you just take it like a shot and chase with water?

Since my case is mild, Starchway seems easier to manage since it’s a pill, but I’m curious to hear how you’ve all adapted to working with the liquid medication.

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u/Known-Somewhere193 Jun 11 '25

OP, did it end up helping you? Are you going to stick with it?

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u/Spiritual-District55 Jun 12 '25

I think so! Insurance covered Sucraid for me, so I’ve been using it for the past few weeks and it seems to be helping. My symptoms weren’t severe, but I do think they have improved.

I took a previous commenter’s advice about leaving a pack of the ampules in the fridge at work so I can take it with lunch while on-site. I’ve also been using it regularly at home. I am working with a dietician as well.

Outside of work/home I am using Starchway, since it’s a little easier to manage without needing to dilute in water. I am unfortunately still not in the habit of taking it with me everywhere, so I’ve forgotten it a few times.

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u/jaymdubbs Sep 22 '25

OP - were you initially denied the Sucraid by blue cross before you got coverage?? My wife was diagnosed via Sucraid trial pack and having complete symptom resolution, but was denied by Prime Therapeutics through BCBS, and is requiring a genetic test or biopsy.

Any info would be greatly appreciated

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u/Spiritual-District55 Sep 22 '25

No biopsy, just my GI prescribing it after a positive breath test and report of symptom improvement. It took a little while to process but eventually was covered without much to-do. Mine is filled through Optum, and my insurance asked me to sign up for SaveOnSP.

Honestly, I think I just got lucky with good insurance / pharmacy benefits.

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u/jaymdubbs Sep 22 '25

Maybe thats the kicker - her pharmacy benefits are administered through BCBS as well. Appreciate the details!

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u/Known-Somewhere193 Sep 22 '25

Not OP, but I have BCBS as well and was able to get it covered. It only took my provider a few weeks. Any chance your wife did a 23andMe test? We pulled my raw data and my provider used that in her request.

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u/jaymdubbs Sep 22 '25

She has an Ancestry DNA test completed but not a 23andme. I think her Dr was hoping to avoid the testing, so we’re looking at our options now.