Corn Free Xyzal, Finally!

I just received an email from my compounding pharmacist out of the blue that he was able to order some Xyzal for me and that it’ll be in in two weeks! His timing couldn’t be better, as I am dealing with some pretty horrific seasonal allergies right now.

And that’s really all I had to say. I’m on something of an unofficial hiatus right now, taking a bit of a breather after a summer of intense preserving. Because I am allergic to pretty much every vegetable that grows between October and May, I had to spend June-September preserving enough food for one adult to eat for 7 months. That’s, um, a lot of food. No cheating and going to the grocery store- if it ain’t in my freezer or growing in a pot in my living room, I can’t eat it. Well, other than pears, apples, oranges, clams, and oysters. Those are the only foods I can get safe nearly year round.

But the details on that is for another post, when I’ve had a bit more time to rest and recover. Just wanted to share my victory! If you’re still trying to find corn-free non-drowsy antihistamines, just know that it IS possible!

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 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.

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

The best you can usually do is to get a high quality puffer (such as the Ventolin brand HFA) to get a higher proportion of medicine to propellant. I use the Ventolin HFA and sometimes I react to it just a little, but so far the benefit has outweighed the negative outcomes. 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.

Really? That’s all?

Well, that’s all unless you’re Canadian. I just came across this: There is a Ventolin Diskus inhaler available in Canada. If you’re unfamiliar, diskus inhalers are non-propellant style inhalers where you simply suck on them to get the medication into your lungs.

There are many ways to get prescription drugs from Canadian pharmacies, however doing so is illegal so I can’t recommend it as a good option. If one were to choose to do so, however, this article gives you a few pointers on the best way to avoid getting counterfeit medications. This is crucial as a counterfeit med could mean a corn-containing med, not just one that doesn’t do what’s intended.

Update on Compounding Xyzal and Zyrtec

Hi all, I’ve been quiet, busily getting the last of the summer/early fall produced preserved while I can, but I just wanted to update you with the compounded antihistamine situation.

So Xyzal and Zyrtec *can* be compounded, BUT the sourcing is turning out to be more complicated than I want it to be. My pharmacist, after telling me that he could get me Xyzal in a 25mg quantity from a reseller, emailed me yesterday to tell me that it was backordered and not available at this time, but “could be in the future.”

I DO know that it is possible to get these drugs from PCCA, the problem is getting it in reasonable quantities. If you have a pharmacist that is able to get you either Xyzal or Zyrtec in reasonable quantities and compound them into corn-free capsules for you, and they can either fill a script with custom filler and ship to Washington state, or can repackage and resell to a pharmacy in Washington state, please let me know, because I’d really like to get a corn free Xyzal or Zyrtec.

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. Corn allergics react to them all the same. 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.
  • 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.

Preventing and Treating Allergic Reactions: What I Do

How I Treat Reactions

Obviously I do my best to make safe decisions and not react. That’s what this blog is all about. But there are circumstances out of my control pretty often, especially since I have dangerous reactions to airborne corn, and honestly yeah, I do just screw up. My diet is pretty limited right now so I *have* to try new things. I am usually very careful and when a food fails I only deal with a very mild reaction before I call it quits, but sometimes I mess up, and sometimes the food is SO corny that trying only small amount causes a major reaction.

So when I do react, this is what I use:

  • 25-50 mg benadryl, compounded in gelatin capsules from Letco and safe filler provided by me
  • 1000-2000mg quercetin (I use TwinLab brand) taken immediately and every 8 hours until symptoms subside completely
  • 150mg zantac, compounded in gelatin capsules with no filler.

For a normal, non-scary reaction, I typically take 1 benadryl. If my reaction is severe, I dump the benadryl capsules out into water and drink, which helps it take effect faster. I have in a pinch dumped the capsules directly into my mouth without water, or even chewed on them to get the medication out and into my system faster, however that makes my tongue and throat numb everywhere it touches, which is a scary feeling when your allergic reaction is throat swelling. More information on getting corn-free benadryl. 

Important: If you are having an anaphylactic reaction, simply taking Benadryl is not enough.  No antihistamine will stop anaphylaxis once it starts. The only thing that treats anaphylaxis is epinephrine. It is common hospital practice to adminster benadryl and “wait and see,” but this is NOT the correct treatment and can and has led to deaths.

If you are in doubt, epi. If you epi, always go to the hospital, period. 

Mayo Clinic Article on how to treat anaphylaxis


Manitoba, Canada public health department info in treating anaphylaxis

Rebound Reactions

When you have an allergic reaction, your body is flooded with histamines which run around creating inflammation all over your body. The actual symptoms of the reactions are due to your various cells’ response to the histamine. Antihistamines like benadryl simply block the receptors on your various cells that would notice and respond to the histamine. That means that when they wear off, if there is still histamine in your system, your cells will start responding again. This is known as a rebound.

The reason I take quercetin in addition to the benadryl is because quercetin is a mast cell stabilizer. Mast cell stabilizers actually help prevent the release of histamine in the first place, which *should* help prevent rebound reactions as the antihistamines wear off. I have noticed that it helps me.

Detoxing

After a reaction it will usually take me at least a day to recover, sometimes up to 10 days if it was a bad one. If I had to epi and go to the ER, I could be toxxed out for *weeks*. My tongue will burn every time I eat something and I will just feel like I’m mild-to-medium reacting constantly, or about to react. I call it “feeling full-buckety.” There’s no real cure for this other than time and lots of water, but there are a few things I do to help move the toxins out of my system faster.

How I Detox After A Reaction

  •  Bentonite clay baths or foot soaks in clay from Living Clay Company. I have only tried the pure bentonite clay (sold as the “detox clay powder”) and not any other products. I am on their mailing list and wait until they have free shipping promotions and then order large quantities at a time. I rarely have time for a full bath but I find that the foot soaks are 80% as effective as a full bath and easy to do often.
  • Bentonite Clay taken internally, with LOTS of water, to help absorb toxins/allergens and move them through the system faster.  I find this works better than activated charcoal at detoxing after a reaction, but I am mentioning both options.
  • Activated Charcoal, taken internally, for the same purpose as the bentonite clay. Again, lots of water to flush it through your system!  I am no longer recommending a specific brand of activated charcoal because the manufacturers keep changing what they do. You’ll need to do some research and find something that works for you.
  • Epsom salt baths and foot soaks- I am sulfur sensitive so I don’t do this anymore but it does help many. Dr Teal’s  unscented epsom salts are available at Kroger, Costco, Target, and on Amazon, and are safe for most.

A Note on Prevention

As i mentioned, antihistamines block the receptors that stimulate your mast cells to release histamines. Therefore blocking those receptors does not reduce the histamines already in your system, nor does it stop the inflammatory processes already happening from histamines that have already found a cell to stimulate. Thus it is better used to *prevent* reactions. Obviously avoiding triggers is the best bet, but something else I do is to take both antihistamines and mast cell stabilizers in advance when I know I am going into a dicey situation. Now, I don’t mean that I take antihistamines and then eat something bad. That’s stupid and dangerous. I just mean that if I think I am going somewhere where I could have an airborne exposure, (like Costco on a weekend when all the food samples are out)  or if I am in a situation where small children will be climbing all over me and possibly trying to stick hands and objects in my mouth, I take some appropriate precautions.

Before I go in to a potentially allergenic situation, I take:

  • 25 mg hydroxyzine hcl
  • 1000mg quercetin
  • 150mg zantac

A Note on Zantac: Antacids to treat allergic reactions??!

When I have gone to the ER for an allergic reaction, they have given me two intravenous injections: Benadryl (diphenhydramine), and Zantac (ranitidine). The first time I got an injection of Zantac, I was totally confused. Isn’t that a medication for acid reflux?

Well, yes it is, but the mechanism by which it does that is by blocking (antagonizing) histamine receptors.  Compare to proton pump inhibitors such as Prilosec (omeprazole).  Prilosec actually stops the production of stomach acid, while Zantac stops the signals for gastric acid secretion *and* allergic reactions from being noticed.

H1 and H2 blockers taken together are significantly more effective in treating an allergic reaction than either one taken on their own. 

Because of this, a number of folks with anaphylactic food allergies take a daily preventative H1 and H2 blocker.  I’m one of them. I don’t hope to be on this kind of medication for the rest of my life. For one thing, H2 blockers have a number of effects on vitamin and mineral absorption over the long timer, including interfering with absorption of vitamin B12. Also, taking drugs just masks symptoms, and I’d much rather find the cause of the problem and heal. But I’m totally okay with doing it right now to reduce the possibility of a life-threatening reaction.

What I Use Daily

The only medication I currently use daily is a prescription mast cell stabilizer called cromolyn sodium. I quit taking antihistamines daily because I was experiencing rebounds of extremely increased sensitivity any time I discontinued them for a day, to the point of having life threatening reactions from airborne exposure.

I take daily:

  • 200mg cromolyn sodium, compounded in a gelatin capsules, 4x daily

During heavy seasonal allergy season, I take:

  • 5mg levocetirizine (xyzal), compounded in a gelatin capsule daily.
  • 150mg ranitidine, compounded in a gelatin capsule, no filler, twice daily

If I am traveling or know I will be exposed to a lot of triggers, I go ahead and take a prophylactic benadryl in the morning and at night. The benadryl is compounded and I take 25mg at the same time as the ranitidine, morning and night.  More if needed. More on what I do when I travel.

About getting Xyzal compounded.