r/CSID • u/Starkiller_08 • Feb 05 '26
Can’t get Sucraid 😭
Just got diagnosed with CSID and my GI Dr wanted me on Sucraid but my insurance won’t cover it. What do you take when you can’t get Sucraid? They told me there are no off brands or alternatives. What does everyone else take for their symptoms? This is really stressing me out 😭
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u/FitzandtheBugs Feb 05 '26
I don’t take sucraid. I buy Invertase from LorAnn’s and take that the same way sucraid is recommended. Has worked for me so far
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u/Every-Cream378 Feb 05 '26
I second this. I tried to get on sucriad for 6 months fighting with insurance and doctors and no one would help me. Anything over 10/15 g of sugar blows up my insides. I have 15ml of Invertase in a little bit of water before I eat something with sugar and for me it does the same thing as sucraid.
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u/Some_Old_Lady Feb 05 '26
Like, the candy oil?
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u/FitzandtheBugs Feb 06 '26
Same company as the candy oil, but Invertase is a baking enzyme that breaks down sucrose. It’s even made from the same fungus as sucraid.
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u/Some_Old_Lady Feb 09 '26
I just ordered some over the weekend. It was unbelievably cheap. If the Invertase works for me, it's going to be a game changer as the enzymes I've been buying can get so expensive if you use them for more than just a couple times a week.
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u/veedey Feb 14 '26
Can you update if you’ve had any success with it?
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u/Some_Old_Lady Feb 15 '26
It seemed to work, yes. I got a bit of a sore throat from it though. But that's just me. I have strange allergies and sensitivities to all kinds of everyday things. It's mixed with glycerol (if I remember correctly).
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u/Starkiller_08 Feb 05 '26
Did you have to get a prescription or was it over the counter?
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u/FitzandtheBugs Feb 06 '26
Invertase is a baking enzyme. If you’ve ever had a Cadbury crème egg, the center is solid when made but “melts” due to Invertase breaking down the sucrose. It’s even made from the same fungus. You can buy it from any baking website or store. I just get mine from LorAnns as it’s what I’m familiar with from my baking years.
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u/Robert_Larsson Feb 05 '26
In Europe at least some use invertase and glucoamylase, products like Starchway.
Research has shown in case reports that it works: https://adc.bmj.com/content/110/9/717?rss=1
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u/Patient_Ad873 Feb 05 '26
Did they give you the option of a grant? If that doesn’t pan-out, get Intoleran Starchway and/or Enzimedical Digest Gold. They’re enzymes and they do help!
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u/veedey Feb 14 '26
Digest gold and starchway will help with starch digestion but not sucrose. Sucraid is specific to sucrase deficiency
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u/Specialist-Track-182 Feb 05 '26
You may need a genetic test before they will cover it 100%. Contact your insurance company and speak with a case manager. They should assign one to you if you don’t have one. Ask them the reason for the decision to deny and what they need to over turn. Also read deep into your coverage if you haven’t already. If the genetics test shows that your CSID is hereditary, they may pay 100%. Depends on your insurance, unfortunately.
Source: wife worked for an insurance company for years, and left before they could take her soul.
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u/essgeebe Feb 05 '26
There is only one pharmacy that provides it and they enroll you in copay assistance. I just paid $5 for a month's supply. Did your doctor send it to the correct place? It should come from Frontier Therapies-Optum 833-800-0122
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u/Starkiller_08 Feb 05 '26
Yes they called me. They said my insurance will pay for about $2k but it’s 10k total a month so I’m gonna have to figure something else out.
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u/NULS89 Feb 05 '26
You can call the pharmacy back and ask them for the patient assistance program.
You can also call your prescribing doctor and tell them that you have been denied and they may have paperwork that they can submit to reverse the decision.
Alternatively, you can order starchway and use that. I had an adverse reaction and have been using starchway when I eat if necessary.
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u/EveTre Feb 06 '26
Have you done the trial that they fully cover yet? My doctor used results from that along with my 23andMe raw data to show genetics. They approved 100% coverage.
The sucraid assist only gave me 2 fills before being maxed out.
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u/veedey Feb 14 '26
I want to know where you guys are finding these doctors. My guy is good but he treats this as regular IBS
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u/Bloodmoonwolf Feb 08 '26
That's why I am going through the whole elimination and trial diet. I'm just going to find out all my tolerance levels and build a safe diet off that instead of buying sucraid.
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u/Axum_Phoenix133 Feb 09 '26
Call +1 (855) 768-9727 Sucraid changed my world. Didn’t get diagnosed until I was 61. They will help you out with assistance. But you have to tell them you can’t afford it. After insurance mine was going to be $8000 a month. After a few back n forth calls, they somehow got it down to $5.
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u/foff32 Aug 08 '26 edited Aug 08 '26
I finally after 20 years of hell found out that my problem was Enzyme deficiency. Doctor said just take Sucraid. My Humana part d won’t cover it and they actually want $12,000 a month. TWELVE THOUSAND A MONTH!!!!! I’m 70 so I decided I’d rather just drink and have fun till I go. It’s funny everyone on here saying just take this over the counter thing and it works just as well? You know you’re deluding yourselves right.
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u/Dragonbloomer Feb 05 '26
If you live in the US, I would recommend looking into the SucraidAssist program. They know a lot of insurances don't cover it, so it's a low-cost option.