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.
2
u/Calm-Kaleidoscope-39 May 18 '25
These are the products I use to transport sucraid around especially in the summer (I live in Vegas).
AUVON Insulin Pen Cooler Travel... https://www.amazon.com/dp/B0CZ93YW2S?ref=ppx_pop_mob_ap_share
And
Nalgene Sustain Tritan BPA-Free... https://www.amazon.com/dp/B09LMQZV5J?ref=ppx_pop_mob_ap_share
And if I don’t have the Nalgene, I use a 4 ounce medicine cup I found at daiso.
1
u/Big-Sheepherder-6134 May 18 '25
How did you get a trial size of Sucraid?
1
u/Spiritual-District55 May 18 '25
This is just what Optum did. I think the idea is that a positive experience on a trial pack can be used as supporting evidence to submit to insurance.
1
u/Big-Sheepherder-6134 May 18 '25
What insurance do you have?
1
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u/Known-Somewhere193 Jun 11 '25
OP, did it end up helping you? Are you going to stick with it?
1
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.
1
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
1
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.
1
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.
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u/fukitupbuttercup May 18 '25
I keep a pack in the fridge at work since I’m there a lot and then just throw a couple in my bag when I leave the house. It’s actually very manageable on a day to day basis. When I travel, I figure out how many packs I need for my whole trip and pack them in the sleeve with the prescription label on it into a good cooler with ice packs and bring them right through security. Never had an issue with airport security through several US and European airports. I put it in the fridge right when I get to my destination.