Zofran

Has anyone had any luck getting their insurance to cover oral Zofran to take on a regular basis?
I am on Medicare and Medicaid, and have been having trouble getting them to cover the oral form of the medicine for gastroparesis. They will cover the IV form that I get once a week during IV Hydration Therapy, but I don't understand why they won't cover the oral form.

I'm having trouble with 3 of the side effects of Reglan: rapid weight gain, fatigue, and breastmilk production (even though I have never been pregnant). I have gained over 35 pounds since I started taking Reglan in April, despite being on a strict diet and enteral nutrition. I was 203 lbs. when I first got my feeding tube in Feburary and started on enteral formula at night. I am pretty muscular in my upper body due to using a manual wheelchair and playing wheelchair sports often. I have a total of 1,300 calories daily, through a combo of solid food and enteral formula, that my dietician has planned out for me. She doesn't want me to get too big, but also doesn't want me to lose weight fast like I was doing before I got my feeding tube and in the hospital often.

How do I go about getting "special approval" for the oral form of Zofran, so I can possibly be switched off of the Reglan. I've heard this medicine is very expensive.

Jessie

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I had no problem getting insurance to pay for my oral Zofran. Have you tried nexium or prilosec? Those work really well to.

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Zofran is very different from Nexium and the other PPI's. Also, Zofran isn't really a replacement for Reglan. Zofran is for nausea, Reglan is to help with the movement of the GI system, and one of the effects also happens to be nausea relief. I'm also on Medicare/Medicaid and what's most disappointing for me is that when I had only Medicaid, my Zofran ODTs were paid for, completely...90 tablets a month. Once I was forced to get Medicare as well, I also have had trouble obtaining oral Zofran, but had no issues getting it IV, even at home. You do have several options to consider though.

As far as treatments for gastroparesis, a substitute for Reglan (which many people have had intolerable side effects from, so don't feel bad, I've heard from more people that don't tolerate Reglan that do, I also had bad side effects from it) is called Motilium or Domperidone. It's generally not available commercially in the US except through some compounding pharmacies (which tends to be very expensive and insurance tends not to pay) or through online pharmacies. There are places to get it without a prescription, however I'd still discuss it with your GI doc before starting it. Main difference between the two drugs is that Domperidone doesn't cross the blood/brain barrier, however some people still can get high prolactin levels (which is what causes the breast milk production) so that's something to still watch out for with the Domperidone. It also has the effect of decreasing nausea. I also didn't have as much of a weight gain issue when on Domperidone. Some people have had a lot of success with Botox injections into the pylorus sphincter during an endoscopy as well. The studies though show mixed results...some people do really well and get it done regularly every 6-12 months or so, for others it worked the first time, for various lengths of time, but the second time around, and with double the dosage, no luck. Last group had no success at all with it. As far as I know, they haven't found a pattern so it's trial and error. There's also the Enterra gastric stimulator (also known as the gastric pacer) but that also has had mixed results.

As for Zofran, there are a few options you have, again, explore them with your doctor(s). There are quite a few other anti nausea drugs on the market like Phenergan (Promethazine), Compazine, medical marijuana (depending on where you live, also has the benefit of helping with pain. I can not and will not advocate non legal methods of obtaining marijuana though so please no one misunderstand me), there's a medication called Marinol which is based from one (or more) of the chemicals in marijuana, but is legal. Zofran injection isn't only IV, it can also be taken intramuscularly (IM injection), which you might be able to get approval for, maybe better through a home care company. All meds have side effects, and everyone has different effects from the meds, positive and negative.

Away from the medications, ginger is known to help nausea if you're able to find a form you can take in and tolerate (Ginger Ale, but I'd recommend that you let it go flat first since carbonation could make you uncomfortable, Ginger Snaps/cookies, etc), Cola (again, flat) can help as well. I've also tried a tea called Eater's Digest from Whole Foods which has things like spearmint which can soothe the tummy and it tastes pretty good in my opinion. Some other stomach soothing teas will also contain ginger. Before trying any other herbal/naturaceutical/homeopathic remedies, consult your doctor since they can have interactions with meds you are on or may effect other medical conditions you may have. Accupuncture can be helpful and not necessarily very risky when performed by a well trained individual. Accupuncture isn't just limited to western medicine, there's medical accupuncture as well. It was interesting, the doctor placed a needle in a specific place on my ear and from what I was told, it was a branch from the vagus nerve, which is the primary nerve related issue with GI motility disorders. I also had laser therapy and microcurrent electrical therapy, which is similar in some ways to a TENS unit.

Last thing to consider (and not to take lightly) is since you require weekly hydration, is to get a PICC line and get daily hydration at home, as well as the IV Zofran. This is how I managed to get my Zofran at home. Central lines though, can be troublesome in many ways.. ranging from minor to potentially deadly. Minor things are that it needs to be kept dry, so taking a shower requires that it be covered up well. Also weekly dressing changes are an annoyance and you must be more careful about washing your hands and keeping things clean because infection is a very serious risk. Can start out local, but since it's an IV line, bacteria have easy access to your blood stream and bactremia/septicemia is no joke.

Like I said, many options, feel free to privately message me if you would like to talk further about anything. I've tried pretty much everything available for my motility disorders.

Hope this helped,
Sarah

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Sarah,

Thanks for the tons of advice!!

Jessie

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if you have a great doctor and half assed ins. some time the doctor will wright a letter to your ins. and they will approve more zofran also check with the drug comp to see if you can get discounts

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Medicare isn't close to half assed...one doctor wrote a letter saying it was for gastroparesis and ALL oral Zofran was denied because "Zofran is not an FDA approved treatment for gastroparesis".

For most insurances a letter tends to work, but for Medicare and Part D, they're rather stubborn about what they'll pay for and how much you can get. That tends to go for tube feeding formulas too, but not as much for TPN and don't even get me started on home nursing, even just to change a central line dressing...the home bound rules meaning you don't take yourself ANYWHERE. Have to be completely dependent on other people to go out and there are other strange description of being home bound necessary for a nurse to change your dressing.

Sarah

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Yea, Medicaid pays for my enteral formula and supplies, because Medicare doesn't. According to my caregiver, Medicare would rather have anyone who is disabled and relies on tube feedings and stuff to be in a nursing home, even if they are young adults, just to make it easier on them.

Jessie

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