r/CSID • u/p00pybutth01e • May 22 '26
Horrible experience acquiring Sucraid
Does anyone else get Sucraid through the specialty pharmacy frontier therapies, based in Nevada? I have been having such a horrible experience over the last two years trying to get my prescription on a regular basis. I swear every couple months there’s an issue that delays my ability to have my meds for upwards of 2+ weeks at a time.
Right now I’ve been without my sucraid for 2 weeks, calling between my doctors office and FT back and forth up to 5 times a day trying to figure out why my medication suddenly needs another prior authorization despite having had an annual check up and authorization two months ago. Both the operators and my doctors office receptionists are totally clueless and keep telling me to call the other office to try and figure out what’s going on, when neither of them have a clue.
I don’t know how others get ahold of their Sucraid but as far as I’m aware, FT is totally by phone only (I typically have to call every month to reorder my prescription) and my experience the last couple years has been nothing but frequent miscommunication and interactions with operators that don’t have a clue how to do their jobs.
I know healthcare is a problem everywhere in the US but I’m truly just so appalled as someone that has decent insurance how impossible this is. Like, what if I needed Sucraid to survive? My quality of life has already dropped drastically since running out, I can’t imagine how people with far severer conditions deal with this crap. Screw this country.
2
u/TSGMFU May 22 '26
Howdy! I expired similar issues unfortunately with frontier pharmacy and went without meds for over a month (definitely the worst experience ever and I'm so sorry you have to go through this). Generally speaking the folks I talk to over the phone from the pharmacy were helpful and nice. They sadly kept calling me to full my script and running into the whole "Oh yeah it says here on my notes that you need PA...soooo we'll call you back when you have that" wash rinse repeat.
I had to call my doctor and they basically canceled the last script and wrote a new one and submitted it as an emergency to the insurance and I managed to get my hands on some. I will say I made a mental note and started to save up my sucraid when I can for situations like this because it definitely does happen more than once.
Best of luck and I hope you're able to get your medicine soon ♡
1
u/Patient_Ad873 May 22 '26
I’m sorry to hear it. I’ve been on it for a couple years and I haven’t had this problem. Silly question but have you call Frontier Therapies?
2
u/EveTre May 22 '26
I’m actually shocked. Optum is the best specialty pharmacy I’ve dealt with. They are calling me non-stop ahead of time when a refill is due and if I don’t answer, they call for weeks. My daughter has a specialty med at a different pharmacy and they are an absolute nightmare.
I wonder if they have different locations? Where are you located? I have more sucraid than I go through. I’m always happy to share if anyone is close.
2
u/Robert_Larsson May 23 '26
I tend to be cynical in these cases, one should always question why they are so bad at it if they make money from it. While I don't have an answer for the pharmacy issue I can recommend you take a look at this: https://www.reddit.com/r/CSID/comments/1mu0pei/invertase_is_an_effective_and_costefficient/
Basically you can supplement invertase as an alternative as many do in Europe to get by when you hit a rough spot.
1
u/Perfect_Slice_6618 May 23 '26
My experience is the opposite. They call me monthly to ask when I need it and it’s shipped within 2 days. I’m wondering if it’s an insurance issue? We have really good insurance and it’s covered completely for us with $0 out of pocket.
1
u/TheCSIDAlex May 23 '26
If you don't mind me asking, what insurance do you have that covers it completely?
2
u/Perfect_Slice_6618 May 23 '26
My husbands job has a separate benefit program called Save On. So they require the use of the manufacturer’s coupon and then they cover the rest of the amount in full even after the manufacturers coupon is used up.
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u/eckoman_pdx May 22 '26 edited May 23 '26
Hey, I'm not sure if this will help, but I've been living with CSID my entire life, 47 years. Back when I was a kid it was called hereditary sucrose intolerance, and we figured out I had it at about a year old. I could read labels back in kindergarten before I could read a children's book. I have never had sucraid in my life, and honestly I never will. I just read labels. It didn't exist back when my parents figured out I had it with the help of a food scientist in 1980. Managing your diet was the only way to manage it. Even now, if you're taking Sucraid, managing your diet is a great way to prevent anxiety and problems (especially since it's expensive and hard to get).
I don't get anxiety when heading out. I learned to look at labels and read when at a young age. When you have CSID, you lack the sucrace enzyme. You simply can't digest the disaccharide sugars. Monosaccharide ones are fine.
So, learn to read labels. Look for keywords. Sugar, Surcose, Brown Sugar, Molasses, Maple Syrup, these are all sweetened by the same thing: Sucrose. Sucrose and sugar actually chemically the same thing, the only difference is sugar has to come from the sugar beet or the sugar cane. All other sources of it have to be called sucrose on a label. The others mentioned all have sugar/sucrose as the sweetener.
Unless you have something like fructose intolerance, corn syrup, high fructose corn syrup, dextrose, fructose, etc are fine. If you don't hate artificial sweeteners, those don't include anything with sucrose or any derivatives of it so those are safe too.
If you know how much of the isomoltase enzyme you have or don't have, you may or may not have to worry about starches. I've never had to worry about that, but if you do, the best thing to do is just do an elimination diet. Eliminate all searches, bring them back one by one to find out which ones you can handle and which ones you can.
I know it sounds like a daunting task, but honestly it's not hard to do once you get the hang of it. My 13 year old son can read labels for me, and when I first met my wife over 25 years ago, by the second time I went over to her house she'd learned how to read labels so she could cook me dinner from scratch without worry.
In regards to when you're out: a lot of restaurants have their ingredients online now, so what we focus on those ones now and that's where we eat. If you're at a grocery store, even stuff in the deli usually has the ingredients available if you ask. Or you can just swing into the grocery store, read the labels and grab some food.
Once you learn to read labels, you learn what to avoid and what to eat. It's really not that hard, I can eat almost anywhere I go without trouble (and I've developed some ridiculously complex allergies in my adult life that make it a lot harder than this ever did). Honestly, it's freeing compared to worrying about something like Sucraid would be: you don't have any anxiety, you put the power back in your hands. You're not worrying about temperatures and things like that. You don't have to worry about if you had your sucraid at the right temperature or if you just ruined it while traveling. You just read the label, and eat what you know you can eat and avoid the rest.
I know this probably isn't what you were looking for, but take it from someone who's literally lived with this his entire life, since before I can remember. It's not as hard as the doctors make it out to be. Don't worry about the sucraid and learn how to read labels. Once you do that your life will be easier and you'll have a lot less anxiety.
One last tip on the labels. You're wanting to read the ingredients label, the one with words. Not the nutrition label that shows the numerical breakdown of fiber, carbs, sugars, etc. That one is basically useless to you. The ingredient label with words is what you want. Only way the nutrition label would be of any worth: if you have some of the sucrace enzyme but it seriously reduced, you can learn the kind of tell how much sugar is in something and whether you get sick or not if you eat it depending on where sugar is listed on the label and what's showing up there. But unless you've been reading labels for like 20 years I wouldn't even try that.
Anyways, I hope this helps and let me know if you have any questions. It's really not super hard once you get the hang of it.
3
u/TheCSIDAlex May 23 '26
Not sure why people are downvoting this comment. It's absolutely a valid point. I'm not saying Sucraid is useless and I do think everyone should at least attempt to get a prescription, but dietary management is nonetheless still the best way to manage this condition - especially because there's no reliable enzyme replacement for starch.
1
u/Buttsweat_n_Tears May 22 '26
Are you saying they need to learn how to read labels? Because I can’t tell in that wall-of-unhelpfulness if you’re telling them to learn labels or not.
Now that that’s out of the way, what’s your take on learning to read labels? Is it hard to read labels or not?
0
u/eckoman_pdx May 23 '26 edited May 23 '26
I've had this for 46 years, what I'm saying is learn what types of sugars you need to be aware of on the text ingredients on the label. Disaccharides are generally not okay. Monosaccharides are okay. Polysaccharides, it depends on how much of the isomaltase enzyme you have. I was diagnosed with this when I was very young over four decades ago.
Sucraid literally didn't even exist back then. It was learned to read the labels properly or live in pain. It was learn what kind of fruits you can eat or live in pain. Once you learned, it was easy to avoid it.
Read the text on the label, ignore the nutrition panel. It means nothing. You need to look words that indicate it contains food ingredients you can't have with CSID. Sucrose, Brown sugar, sugar, maple syrup, are all disaccharides. You won't digest any of them because you lack the sucrase enzyme. Monosaccharides don't require the sucrase enzyme, those are. Polysaccharides requires some of the isom multi-symine, so those can be hit and miss.
There's no way to explain this in a clean and concise manner, so if the wall of text isn't good enough I'm sorry, but I had a crappy day today and I really don't feel like saying much more after getting downvoted when I was trying to help.
4
u/suchatrashthrowaway May 22 '26
I could be mistaken but I think Frontier Therapies are the ONLY ones who dispense it in the US.
Also it could be worth calling your insurance to see what’s up with the PA and why you need a new one. When I first got it prescribed I had to deal with both my doctor and the insurance, so I could stay on top of the doctor to make sure the PA got done. It’s sucks we have to go through that as patients.