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Need Advice About Medication


Lindsay630

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Lindsay630 Rookie

Hi Everyone,

I haven't been on in a while, but need your help now....I was given a RX for Zofran from my PCP. She wrote on the RX Please only substitute IF no gluten components, pt has Celiac. Well I went to pick up RX and the generic has gluten. So I assume they have the original (non Generic), they do BUT it is $800.00 That is for about 1 months worth! NO WAY can I afford that. I called my insurance and the representative told me I was acting like a spoiled brat and should just take what they will give me "you will be Fine". I still filed the appeal, but it will take 6-8 weeks for them to make a decision. What makes me the most angry is that it isn't even an MD that reviews the appeal its a Pharmacy Tech! Yea they know more than an MD right? Has anyone ever dealt with this? Any advice? Thanks so much for any and all help!

Lindsay


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ravenwoodglass Mentor

Call your doctors office. Many times another med can be substituted and also on occasion an office will have sample packets that they can give you.

Takala Enthusiast

Call the doctor's office is right. The doctor's are trying to fob this off on the patients and letting them wrangle with the pharmacies and the insurance companies, but it is their job to write the prescription in a way that it is clear that the script has to be filled without it containing the allergen.

Your insurance is trying to rip you off. Don't let them. You must contact the doctor's office immediately.

You can also file a complaint with your state's attorney general's office about the insurance company refusing to fill a script as written by your doctor.

That's right, I said "allergen." That is the word I use I use when dealing with dimb bulbs in the pharmacy technician world. I tell them I am allergic to wheat, rye, barley, AND the proteins and starches made from such, and I cannot take anything with that in it. This is because the word "allergy" is understood, while they may not recognize the significance of "gluten intolerance" or "celiac." Or they may pretend to not recognize it. If they do not know, THEY need to let me talk to the pharmacist and ask, or they need to contact the manufacturer and find out.

While technically, I comprehend that I do not have an "allergy," but an auto immune reaction, for the intents of how they are perceiving the ingredients, that's how they have to look at it. Pharmacy techs may not realize or care that my auto immune reaction is not an upset stomach, but neurological reactions and a flare up that may make it impossible for me to drive.

The last time I went to get a script filled the idiotic pharmacy technician at the drop off had no idea what I was talking about, and was pulling this "uh, I think you'll be fine" routine, so I asked her to let me consult the pharmacist as this was an allergy and we had to check with the manufacturer. The PHARMACIST does not know for sure and tries the same routine, at which point I said we need to contact the manufacturer, who is it, she says she doesn't know and opens the package and there is NO manufacturer nor country of origin listed. (at this point I am getting annoyed, and you don't want to see that. I don't get mad, but I am not a pushover.) She says she will get the tech to give me the name of the product distributor. The snotty little tech finally gets the name of the distributor, and I call them on the cell phone because they cannot be bothered- they refuse to do this. The product distributor tells me they need the official store number of the store. I try asking the counter clerk, who can see me doing this, and get told to go away as they are too busy. Nice customer service, eh ? I give the store's address to the distributor, and he finds the manufacturer (finally) and gives me their number. He also checks the ingredient list on this particular item, and says he thinks I am fine, but that I should call the manufacturer and make sure.

I call the number for the name of the manufacturer. Which is in a different time zone, and I get an answering machine saying they are closed until the next day.

At this point I don't want to get a script filled with this store, and I am going to go home and try this the next day at a different place closer to where I live as I don't want to ***** around with these idiots who are selling Rx drugs that they don't even have labeled on the box as to the country of origin and the manufacturer, and who are acting annoyed that I need to know this because they won't look. And I will be able to get to my computer and look it up faster now that I have not only the product name, but manufacturer and point of origin.

It goes better at the second store.

This was not the fault of the doctor, he wrote it as "fill this in a form that does not have the allergens" and said to call him if the pharmacy balked, but it was later in the day.

Loey Rising Star

Hi Everyone,

I haven't been on in a while, but need your help now....I was given a RX for Zofran from my PCP. She wrote on the RX Please only substitute IF no gluten components, pt has Celiac. Well I went to pick up RX and the generic has gluten. So I assume they have the original (non Generic), they do BUT it is $800.00 That is for about 1 months worth! NO WAY can I afford that. I called my insurance and the representative told me I was acting like a spoiled brat and should just take what they will give me "you will be Fine". I still filed the appeal, but it will take 6-8 weeks for them to make a decision. What makes me the most angry is that it isn't even an MD that reviews the appeal its a Pharmacy Tech! Yea they know more than an MD right? Has anyone ever dealt with this? Any advice? Thanks so much for any and all help!

Lindsay

Sometimes the pharmaceutical companies that make the product will give it to you. It would be worth checking into. I know AstraZeneca does that when a patient can't afford to pay for their prescription.

Loey

SGWhiskers Collaborator

I agree, talk to the doctor's office and get some samples to start you out. Usually there are more than one manufacturer of generics and you can shop around from pharmacy to pharmacy to see which ones don't have gluten. I know it is a pain, but I've been able to locate gluten-free versions of generics that way. I actually was lucky enough to have my regular pharmacy do the research for me one time. If you are stuck with one pharmacy chain, you could have them order a generic version that is gluten-free if you two can work together to find it.

I also like the idea of just subbing in another medication if possible.

The insurance company is ethically wrong and I've been in your situation before. Fortunately, my pharmacist and I were able to find generic alternatives with some research. It may be that the alternative you come up with is an injectable or something that will cost the insurance company more to fill in the long run. I kind of hope so.

Oh, also check different forms of the medication. I had one med I took that had one of my allergens in the liquid and tablet form, but not the pediatric chewable. I was given a script for a large dose of the pediatric chewable instead.

Also, have your doctor call the insurance company directly. I got that same med approved because the doc knew how to work within the insuranc system. Otherwise, they wanted me to pay for all of it out of pocket.

K8ling Enthusiast

My zofran is generic and is gluten-free... I haven't had a problem with it.

Lindsay630 Rookie

Thanks everyone. After over 3 hours on the phone, my insurance company approved it! I can't believe they finally caved. I got a representative who understood celiac. I am so disappointed in the US healthcare system. Thanks again for all of your advice.

Lindsay


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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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