Ask Corn Allergy Girl: Finding a Compounding Pharmacy

The Question

Hello,

I recently developed an allergy to ALL of my prescription medications. I take several of them and they are medications that I desperately need. Everytime I take them I have itching. I researched all of the ingredients and found that they all contain the same fillers & inactive ingredients. The common ingredient is magnesium stearate, but I’m not sure if it is the specific culprit. There are so many. I am having trouble finding substitutes that do not have all of the same exact fillers or any fillers for that matter! This is so frustrating! I don’t know what to do. Even OTC meds have all the same crap. I have prescriptions that need to be filled right now, but I am afraid to. My pharmacist thinks I’m crazy and we got into an argument over it. I live in a rural area where there aren’t any compounding pharmacies. Do you know of a reputable national compounding pharmacy that uses pure medication without fillers? I am going to an allergist next week. I hope she believes me & is will to try a REPUTABLE compounding pharmacy that uses pure medication without using crushed pills. Please I would appreciate any suggestions.

Thank you!
Sheri

Some Background: There’s Corn In Medications?

If you look at the inactive ingredients of just about any prescription medication, chances are you will find at *least* one item from the corn allergens list, very likely corn starch. What to do then? Sometimes you may be able to find a version of the medication that is either corn free or has little enough corn that you can tolerate it. If not, you may need to have some of your meds custom-made for you with ingredients you tolerate. There are pharmacies called compounding pharmacies that can do this for you.

My Response to the Question

I have been exactly here and it’s scary and frustrating.

First, are you on the Facebook Corn Allergy group and/or the Delphi Avoiding Corn Forums? If not, join one or both of them immediately. You need some support, and there may even be a member of one of those groups who is in your state and already has a pharmacy they are working with.

There are a couple of reputable national compounding pharmacies. College Pharmacy is one. However the “big guys” that can ship to every single state rarely use custom filler, and I find it highly likely that you will need to provide your pharmacy with a custom filler you know you tolerate. If not now, you probably will later. So rather than go for a national compounding pharmacy, it would be better if you can find someone more local to you via the Pharmacy Compounding Accreditation Board.

If I were you, I would use that registry to find someone near you, either in your state or in a neighboring state, and ask them:

1) Do they make their custom prescriptions out of the pure drug, without fillers, and mix in their own fillers on site if fillers are needed? (Some “compounding” pharmacies get the drug already diluted with corny fillers, and this will not work for us.)
2) If fillers are required, are they able to use a filler that YOU provide, if you are unable to tolerate any of the fillers they stock?
3) If you do not tolerate the soap they use to clean the capsule machine (many use Dawn which is corny), would they be able to use a different soap for you?
4) If you do not tolerate the gloves they use to handle the meds, are they able to switch to a different type?

The answers to all of the above should be yes in order for you to do business with a pharmacy. Even when they answer all your questions correctly, be prepared that the first time you fill a script, it may not be successful, so don’t go ordering a 90-day supply to begin with.

Note that I personally do not need to have them use a custom soap on their capsule machines, however my pharmacy is willing to do so if needed and that is comforting to me. At the time of writing I have them use Karlin’s Finest Baking Soda for a filler and Letco brand gelatin capsules. They don’t use custom soap on their capsule machines but they do refrain from stuffing their bottles with cotton and I have asked them to not use packing peanuts when mailing my prescriptions.

Getting Medications Compounded on News for Corn Avoiders

My Additional Notes on Getting Medications Compounded

Corn Free Asthma Treatment

What’s corny about asthma inhalers?

The propellant in modern HFA puffer-style inhalers almost always contains ethanol from corn.

There are several steroid or combination steroid-and-topical-anti inflammatory diskus inhalers that don’t use a propellant at all, but rather contain dry powder that you use the power of your inhaled breath to pull into yoyur lungs. Some preventative diskus inhalers are: Advair Diskus, Asmanex, and Flovent Diskus.

Note that so far all diskus inhalers contain lactose, so the severely dairy allergic are out of luck here.

However steroid inhalers are only useful for preventing an asthma attack.. they won’t treat one that is already happening.

What do I do if I’m already having an attack?

Your best bet would be the Ventolin brand HFA inhaler. It contains contains albuterol sulfate, but the propellant is not corn ethanol, it’s tetrafluoroethane (HFA 134a). The Xopenex HFA inhaler also uses this propellant but contains other exipients such as oleic acid and dehydrated alcohol which is most likely from corn. Ventolin has no other ingredients. I use the Ventolin HFA and sometimes I react to it just a little, so I don’t think it’s entirely corn free, but so far the benefit has outweighed the negative outcomes. Other inhalers including the popular ProAir HFA made my throat close.

Update March 2016: I’ve just discovered that ProAir is now making a non propellant albuterol inhaler that works like the steroid inhalers mentioned above. The only ingredients are the albuterol and lactose: ProAir Respiclick

If you can’t tolerate that, your best option is to get a nebulizer, which is a device that does the propelling for you. Then you just put the powdered drug which can be compounded corn free into the chamber and get the medication delivered. (Some nebulizer powders may be corn free off-the-shelf, check inactive ingredients.) There are pocket nebulizers for carrying with you however they are still somewhat bulky.

Corn Free Medication: Getting Prescriptions Compounded

Compounding pharmacies are pharmacies that get the pure active ingredients for a medication and put them together into custom formulations for you. Since corn products are in so many medications, a compounding pharmacy is often the only way to get a corn-free version of a medication. Rather than repeat good information that’s already been given, I’m going to direct you to an excellent blog post on getting medications compounded corn free and then add my own notes to it:

Getting Medications Compounded on News for Corn Avoiders

My Additional Notes

  • Your doctor may not know how to write a compounding prescription. Here is a link on how to do so to print out. Basically, they need to write “Compounded medication. Free from corn, [other allergens].” Then the *generic* name of the medication, and the amount and prescribing instructions. As long as they write compounded, though, your pharmacy should be able to call them and get any details worked out.
  • Some insurances cover compounding prescriptions with no problems, some won’t cover them at all, and some only cover if the drug is in their formulary, meaning it would normally be a precription. So compounded meds like acetaminophen or Benadryl are often not covered because they are usually over the counter. You’ll just have to talk with your insurance. In general compounding pharmacies do not bill insurance for you, so you do have to pay up front and then submit later.
  • Call several pharmacies until you find one that is willing to work with you. Explain that you need everything done just right because you react to a number of preservatives, excipients, and sweeteners. If they are disbelieving, move on. Ask about whether you can bring in your own filler to use that you know you tolerate, since you may react to all the fillers they use normally. If they are hesitant, move on.
  • Some compounding pharmacies charge more than others. If you have a few that seem like they can work with you, ask them the price for a 90 day supply of the first drug that you want (probably Benadryl, since there is no corn free version available off the shelf) and use that as a comparison point.
  • When you fill your first prescription, less is more. Go small because if you react, the pharmacy will probably not give you your money back. Maybe they will, but I wouldn’t count on it. With compounding unfortunately you can’t really fill just 1 or 2 pills for just a few dollars, as they have to calibrate the machines and all that jazz for 1 pill or for 100. So usually there is a minimum charge for that, and then a discount for quantity. So for example, a 90 day supply may end up being not much more expensive than a 30 day supply, but a 10 day supply could cost the same as a 30 day. Usually the price breaking point where you are paying a decent amount per pill is about 30 days. Or that’s been my experience.
  • If you are getting a capsule with a filler included in addition to the medication, be sure the filler is safe for you. Lots of times pharmacists try to insist that microcrystalline celllulose and lactose monhydrate are corn free. Many corn allergics react to them all the same. (Note: They may also be safe for you, it’s just not impossible to react to them. You will need to make sure.) The gelatin or veggie capsules may be corny, even if the manufacturer states that they are not. If it is possible, see if you can get a sample of the filler and capsules they want to use, without the actual meds, to trial to make sure you tolerate them. If you can’t tolerate any fillers they stock, they should let you bring in your own. Or really just start out with bringing in your own to reduce variables.
  • Many medications can be compounded without a filler. Do that when possible. Benadryl usually requires a filler because the amount of active ingredient needed is too small for the machine to measure. Some pharmacists will hand-stuff the pills without the filler but very very few.
  • If you are someone who is really having a lot of trouble finding a filler you tolerate, due to multiple sensitivities or an extremely sensitive corn allergy, you may need to go to some effort to find a pharmacy who is willing to make some pills for you without filler. Normally for very small doses like 100mg or less (so that would be most antihistamines) people say that a pill “can’t” be made without a filler. What they mean is that it can’t be made EFFICIENTLY. When using a capsule machine, one mixes up enough med+ filler to just exactly fill each capsule with the right dose and then does all the pills at once. If one were to sit there and hand stuff each individual pill, they could do it without the filler. Now finding someone who is willing to do this may be hard, but is technically possible. People have accomplished it. So if you need to, and a

    Here is a youtube video showing how pills are made by one compounder.

  • In addition to the capsules, medication, and filler, watch out for them stuffing cotton into the bottle to keep the pills from rattling around. I swear the cotton my last pharmacy used was corny somehow. Also watch out for whether they ship their meds with packign peanuts in the box. Those are made from corn starch.
  • There are some pharmacies that say they do compounding but do not actually order the pure medications. They get their medications from a distributor that actually already has excipients, fillers, and inactive ingredients in it. McKesson one such company- they distribute powder-form drugs with fillers already in it at specific concentrations, and the fillers are often corny. When you contact a compounding pharmacy make sure that they are getting the PURE medications.
  • Note that some pure medications are corny. Acetaminophen is made with acetic acid, which can be from corn. Antibiotics are cultured on corn sugar. Any mineral that ends with “citrate” or “lactate” will be that mineral + citric acid or lactic acid from corn. If you need the drug you need the drug, but be aware that the pure meds themselves can cause a reaction.

Corn Free Antibiotics

There is no such thing as a 100% corn free antibiotic. BUT, if you have an infection and need a safe-ish antibiotic right now, here are some possible options:

Rocephin (Ceftriaxone) Injection

Many corn allergic folks have had success with a rocephin injection. I have never personally done this, but here is the package insert. It looks like it can be prepared in water or in ethanol. Ethanol is corn alcohol, so request that the solution be in water, and double-check the package insert in the office to be sure that the inactive ingredients look safe. (Cross reference with the corn allergens list.)

Additionally the rocephin injection is often combined with a numbing agent, lidocaine, which can be skipped. Preservative free lidocaine (Xylocaine is one brand) can be corn free but you will need to check package inserts, not all clinics have the corn free version in stock.

There may also be other injections that could be safe. Check using these resources: how to find inactive ingredients of medications.

Update 2015: I personally have gotten this injection… There are a few different brands but basically I got a Ceftriaxone injection that was a powder with only the active ingredient. My doc mixed it only with distilled water. It hurt a LOT. I am a grown up with a fairly high pain tolerance, and I was crying a little.  I did have a mild/moderate reaction from it that passed within 3 hours, and I believe it was a corn reaction from the growth medium, but I don’t really know. I recommend pre-treating with any safe antihistamines you have before getting the injection.

Zithromax Brand

The Zithromax brand, 600 & 250mg,  are very corn lite.  Not corn free, but I’d take them in a pinch. The generics all seem to have corn starch, so brand name only.

Cephalexin

There are many corn-lite formulations of cephalexin.

Here’s a list of all the formulations of cephalexin and their inactive ingredients. Depending on sensitivity, you may be able to get away with taking one that just has as few ingredients as possible and no corn starch.

If you need pills and can’t tolerate potentially corny derivatives, you will need to have your antibiotics compounded. Here’s some good advice on how to do that. 

Note that much like probiotics, antibiotics are not 100% corn free just due to what they are. They are a product of microbes and are almost always grown on a medium containing corn sugar.

So with that in mind, I would avoid antibiotics as much as possible, opting for natural remedies as much as you possibly can. But sometimes you have no other choice, and when that’s the case, be aware that even if you get the “cleanest” antibiotic you can get your hands on, you will still be getting some corn, and prepare yourself accordingly.

Finding Inactive Ingredients of Medications

There are a few different ways to find inactive ingredients of a medication. My absolute favorite by far only works for pills, but I always check it first. It’s a brand new search engine from the NIH called Pillbox. In fact, it’s so new it’s still in beta stages.

This search engine is intended for identifying “mystery” pills, but I’ve been using it to get a quick list of every manufacturer of a particular drug and the inactive ingredients.

Here’s a brief tour:

pillbox_0

Go to http://pillbox.nlm.nih.gov/ and click on Advanced Search (picture on the right).

pillbox_1

In “Drug Name,” enter the name of the drug you’re looking for. In this case, I’ve entered cephalexin, the generic name of Keflex. This will give me both the brand-name drug and all generic variants.  Click Search.

cephalexin_2The search results will give you a listing of all known manufacturers and dosages of the drug, with the inactive ingredients listed right on the page. You can click hide/show next to “Inactive Ingredients” to see the full listing.

If I can’t find what I’m looking for on this search engine, or need more details, my next go-to search engine is NIH’s DailyMed database, which is an archive of package inserts for all kinds of medication and medical supplies.

For each med listed on DailyMed, there should be an “ingredients and appearance” section on the bottom.

dailymed1

The inactive ingredients should be listed in this section.

dailymed2