I’d Move Mountains to Stay on My Acid Reflux Medication
Insurance issues result in a painful night for columnist Lisa Weber
One of my favorite smells is that of homemade soup simmering on the stove. It’s like a warm blanket for all of the senses. I used to make it when someone was sick, but after my scleroderma diagnosis, I found it helpful to make a huge batch and freeze it in dinner-sized portions for challenging days.
The day after this year’s successful Thanksgiving feast, I was running a little low on energy. To save myself from exhaustion, I pulled out a big jar of soup from the freezer and popped it into the microwave. Dinner done!
The story usually ends there, but not this time.
One spoonful went down the hatch, and one volcanic explosion came back up. Gurgling, bubbling, sizzling bursts of fire consumed my throat. I quickly grabbed my glass of water and started chugging it to extinguish the fire.
Big mistake.
The only thing worse than extreme acid reflux is a stomach full of liquid. The drink goes down like a soothing lozenge, but it quickly mixes with the acid and comes back up as a torch.
I spent the rest of the night propped up and sucking on Tums, an over-the-counter acid reflux medication. Normally, my inclined bed is all I need to offset my lack of stomach and esophageal muscles. But on that night, I had to sit up completely straight to avoid choking on acid foam. The whole thing was torture. A slow, constant, burning torture.
Dexilant heals my acid reflux
I’ve been on Dexilant (dexlansoprazole) for many years now. It’s my miracle drug. With it, I haven’t had to worry about the types of foods I ingest, and I certainly haven’t had to worry about drinking too much water in one gulp. The medication literally ended my war with acid reflux.
So why am I suffering again? It’s all thanks to a battle with my new insurance company.
Dexilant is considerably more expensive than other reflux medications on the market, so my insurance company wants me to use one of its cheaper counterparts. It comes down to sticker shock! However, what they don’t understand is that this is a case of “you get what you pay for.” Dexilant works much better for me than similar, cheaper medications.
Getting it approved by insurance requires doctor authorizations and denial appeals. Even after I got my old insurance company to pay for the drug, they’d still try to save me money by suggesting Prilosec (omeprazole) as an alternative. I found creative ways to decline the offer. My favorite was, “For me, Prilosec is like using a garden hose on a house fire. Dexilant is like the fire department putting out a car fire.”
Apparently, it’s such a wonder medication for me that I forgot all about how awful acid reflux is. It’s like giving birth; after it’s over, you remember how painful it is, but only like you were a bystander witnessing it. The mind’s an amazing thing, forgetting things to protect you.
One dose can change everything
When this medication battle began, I thought, “I’ll be OK without Dexilant for a few days.” Insert eye roll, please. After missing one dose, I had a flamethrower performing the show of a lifetime inside my esophagus!
Luckily, I had a backup plan and only suffered for one night. As my top-notch doctor went toe-to-toe with my insurance company, I filled my prescription using GoodRx. Without insurance, the medication would cost over $800 a month. With a GoodRx coupon, it only cost me $96. And if you haven’t caught on yet, Dexilant is worth every penny I can afford!
I’m still doing my best to get my insurance to cover this drug. The cheaper I can get it, the better. After all, it’s only one of seven medications I currently depend on to provide the quality of life I deserve.
When you find magic, the potential side effects and risks don’t seem to matter as much. I don’t want to live 20 years in extreme discomfort if I can live 10 and enjoy every moment.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.
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Comments
Chris Robinson
Dexilant doesn't cure acid reflux. It is a PPI (acid suppressant drug) that reduces acid, not reflux. It simply makes it less damaging.
There are a number of PPIs and research has found them all to be as good as each other when used in equivalent dose.
Dexilant is over-hyped and over-priced. NHS recognises now US insurance companies are understanding that too.
If you want to learn more about Acid Reflux and its possible compliactios and management, I'll happily provide more info.
Lisa Weber
Thank you for making sure everyone understands there's no cure for acid reflux. That's an important fact. We can only control the symptoms of reflux. And if it's not coming up, it's not doing additional damage to the esophagus.
I can certainly appreciate your strong stance. And I can only speak for myself- we all have to see how our bodies respond to medications before we can determine if it's the best fit. I have been living with extreme reflux since 2014 and five spent years on three different types of PPI meds. While cheaper, I was still miserable. Dexilant has been the game changer for my body. Besides taking a pill once a day, I forget I even have reflux issues. I hope this helps clarify the message/experience I was writing about in this column.
Joan Krajca-Radcliffe
Dexilant has a bimodal distribution where it releases twice a day, which none of the other H2 blockers or PPIs has, which is why it is so effective for some people. The generic (dexlansoprazole) also has the same formulation as the brand name form, making it particularly effective as well. It has been a life-saver for me as well when my scleroderma GI specialist prescribed it after a repeat endoscopy showed a second bout of erosive esophagitis and interval development of a new hiatal hernia despite several years of maximum dose PPIs supplemented by H2 blockers as needed. I had no other medication solutions, and I also questioned the “miracle drug” with the high price, but the science theory behind it is sound and it works for me when nothing else does.
Anne Payne
I’m sorry to hear that you’re struggling to get the medication that really works for you. It’s understandable to be offered a cheaper alternative but if you know it doesn’t’ work as well for you, why should you be forced into taking a drug which could make your symptoms worse and end up costing your Insurance company more in hospital visits, senseless!
I have a similar problem here in the UK, whilst we don’t have to pay our NHS at the point of delivery for treatments, medication, consultations, surgery etc, sounds wonderful doesn’t it, but we do actually pay a NATIONAL Insurance tax if you are of working
age and our choices are few. Our GP’s are run on a business type model and I have often been offered cheaper alternatives,
my problem is I am very often allergic to these cheaper alternatives. Like you I then have to put my battle armour on to then get
the brand of drug which suits me, as a result of being offered these cheaper drugs I now have to carry an Epipen, which then costs my GP practice even more! Wherever we live and whatever the health system we shouldn’t have to argue our case to
get the correct drugs we need.
Lisa Weber
Oh Anne! I hate that you understand. There are many things wrong with medical care across the entire globe. Stay strong and take it one day at a time. It's so frustrating, but it will not break us if we don't let it!
Aimee Stevens
Insurance is so frustrating! I recently had to have this argument about omeprazole as I've been on it for as long as the insurance company deems "necessary and safe". Luckily I was able to resolve with my poor docs doing extra paperwork, but it's frustrating to be told you can only get 3 months worth of a medication that you NEED (hello little to no espohoageal motility and nightly acids bouts!) EACH YEAR! Good luck in your quest to get what you need.
Cindi Brannum
Lisa - when I had to deal with breast cancer in addition to my SSc and ILD; I was asked to go "clean" from all my meds to quality for a breast cancer clinical trial. I did 30 days prior to bc surgery. Unfortunately, I was disqualified due to my lung issues.
So rather than go back to all the meds, I wanted to stay "clean" to see what happens. That was May. It is now December and I am just now feeling a few effects as I did when first diagnosed. BC I am not gluten-free; I'm staying off all things gluten. I have always ate my Mexican/Italian food for lunch rather than dinner. Cutting down the effect of acid reflux. I do not eat any spicy or hot food. At all. I never liked it so I don't miss it. Then I never went back on my PPI meds. Why? Bc I found "Gin-Gin" or a ginger-type candy to suck on and chew when the reflux presents. It works. For me. Where did I get it? From Cost Plus World Market originally and now I've see it at WalMart. It's cheap and it's good and it works. That's good enough for me. I'll take natural over meds any day. I'm worth not having any side effects OR the expense of a high dollar drug. I learned "that monopoly" game years ago. I don't play it. I just find another way bc other ways exist and just waiting to be discovered. Best wishes and be blessed, my SSc friend!
Kathy
Lisa, I have run into the same issue with budesonide. I now order it through GeniusRX out of Boca Raton FL. I am so happy it works for you! In addition to systemic scleroderma I have lymphocytic colitis. Tried the dexilant for that but it did not agree with me. My best, Kathy
Kim
I have scleroderma and in the beginning,I was going downhill fast with everything under the sun was going on and I knew if I didn't get it under wraps I don't think I would be here right now. I was so petrified because of the fact I feel there are too many people ready to tell you what you need from a stance of pushing cheaper brands rather than from empirical experience and getting as much people on the treadmill, taking meds and big pharma making money. I understand how it must be for you to constantly rally for your health fiercely all the time. Unless one can empathise with the suffering because thinking one know better than the person suffering and then go home at the end of the day to ones cosy home whilst the sick is suffering at home 24/7! I instinctively feel that we are all caught up in this pharmaceutical money making vortex and just our symptoms are being dealt with in a very clinical fashion. This is why I personally do a lot of fasting, eating so healthy - I can't believe sometimes what I eat (early days it was herbs, vegetables, mainly greens and reds and sweet potatoes and fish) and exercise and getting quite fit (which the stairs used to be challenging for me). I was so scared that if I landed in hospital there would be a lot of medical talk going on around me yet I'm not getting any better. My symptoms have gone right down to sometimes I feel normal, although some things still going on - we soldier on. I saw the doctor a few days ago and I pre-empt his clinical attitude, everything is stereotypically concluded without even sometimes doing the proper test because test cost money. Even worse with the state of the NHS in UK right now has made me even more concerned if I land in hospital so I do what I can for myself and I tend to see what my GP is going to say or give me! Anyway, I love reading about your daily battles and I pray you can continue with Dexilant as you know your own body and is better placed to know what works from what doesn't work from the way your body responds. No one can tell you you are not in pain when you are and a particular brand of med relieves you of that pain better than cheaper brands because you are coming from an empirical stance and not something taken likely. Best of luck for the future. Scary stuff when people think they know what works for you better than you yourself from experience!
Mary Adcox
I agree 100% on Dexilant being the ONLY medication that works for me. I have tried the others and it is miserable. The reason being is that Dexilant works over a 24 hour period and the others do not. I use good RX and now take the generic but am also fighting with my insurance company to cover it. For those of us that have had success with Dexilant it is not overhyped and I also will continue to purchase it so my quality of life does not suffer. For those who have found relief with other less expensive options consider yourself blessed.
Leslie
I have had the same difficulty with my insurance too! I have been on and off Dexilant for many years due to my GI issues with scleroderma. My insurance now refuses to cover the cost and will only cover the cheaper medications. If only they had to live a day in our shoes to deal with the pain & discomfort, they might understand. I have had numerous phone calls with them, along with my GI doc working on my behalf and appeals with them, and still, they won't budge.
I tried it their way, tried the other medications to show I was willing to give it a try, and I was extremely miserable. We should not have to live like this when there are options available for us that work. I now order the generic brand through a Canada site, which makes it affordable for me to continue taking.