Category: Health

Hypermobility and Ehlers-Danlos Syndrome: What I Wish Everyone Understood

Hypermobility and Ehlers-Danlos Syndrome: What I Wish Everyone Understood

What is Hypermobility?

Hypermobility refers to unstable joints that bend farther than they should.  Many hypermobile people do not realize that what they do is out of the range of normal motion or that it could harm them, until they start having pain. And then often when hypermobile people finally DO have pain, it gets misdiagnosed as something else because what hypermobility is and what it can cause is so poorly understood. 

Not only did I spend most of my life not realizing that my chronic pain was caused by my hypermobility, I was so convinced by others in my life that my pain was “normal” that it took me a long time to even admit that I was different.

When someone first told me I was hypermobile and should look into EDS, I told them that I didn’t have chronic pain. Except for the part where I had some amount of pain every single day, and people without chronic conditions go days or even weeks of their lives without feeling pain unless they are injured.  I didn’t feel that I had any physical abnormalities or “loose” joints even though I injured my rotator cuff parallel parking my car at age 18, and had fully dislocated my hip around the same age doing kicks in a martial arts class. I thought I couldn’t be hypermobile because I couldn’t do splits, but I had all kinds of party tricks I could do with my bendy hands and fingers, and historically *used to* be able to do a number of flexibility tricks that I stopped being able to do because of what turned out to be osteoarthritis.

Everything I described in the previous paragraph is a symptom of my hypermobility, and is not typical.  I wish I had understood that a long time before now. It would have saved me a lot of pain and rehabilitation time.

Here’s what I wish patients, practitioners, family, and friends understood about hypermobility. 

Things I Wish Everyone Knew About Hypermobility

  • Hypermobility is NOT rare. 
  • It’s not just human pretzels –  Hypermobility is not the same as being flexible.
  • Hypermobility can affect more than your joints.
  • Hypermobility is linked with mast cell activation disorders.
  • Hypermobility pain is treatable. 
  • Even if you “only” have hypermobility and not Ehlers Danlos syndrome, you still need medical care for your symptoms.

Hypermobility is NOT rare. 

At least 3% of people have Joint Hypermobility Syndrome. That’s about 9 million people in the United States.  This is a conservative figure: other statistics place it closer to 20% of people.

It’s Not Just Human Pretzels: Hypermobility is Not the Same as Being Flexible

Many people confuse being hypermobile with being “flexible”, and think if they aren’t contortionists or can’t do splits that they can’t possibly be hypermobile. This isn’t true. 

Flexibility refers to your muscles being able to lengthen. Hypermobility refers to your ligaments lengthening.  This lengthening may not cause inflammation and pain in the tendons and ligaments when someone is young –  but it may begin to happen with age. Regardless of whether the ligaments or tendons become painful or damaged, their laxity creates a situation where your joints just don’t stay fully in the socket and slide around in the joint space and damage the cartilage, and this can cause bursitis and/or osteoarthritis.  Again, it is common for joints to “feel fine” when younger and become damaged with age. 

Depending on the person and the type and degree of hypermobility,  these hyperextensions causing pain “with age” can mean age 10, age 20, age 30, or even age 50+. 

Continue reading “Hypermobility and Ehlers-Danlos Syndrome: What I Wish Everyone Understood” →

Mast Cell Activation Syndrome

This blog is about corn allergy, but it’s no secret by now that I don’t “just” have a corn allergy. I also have a mast cell disorder, and that is likely the reason my corn reactions are so severe and sensitive. It is also the reason why I react to so many other things besides corn. More and more people with corn allergies are looking into mast cell disorders for themselves, so I figure it’s high time for me to discuss them here.

What Are Mast Cell Disorders?

Mast Cell Activation Disorders (MCAD) are abnormalities of your mast cells. Mast cells are a very important part of your immune system and are involved in your body’s defense against pathogens. They protect your body from invaders by releasing inflammatory factors including histamine, such as in an allergic reaction. When you have too many mast cells, or they are malformed or dysfunctional, you can have allergic reactivity without the same immunological pathways involved in allergies. There are two types of mast cell activation disorders: Mastocytosis, and Mast Cell Activation Syndrome (MCAS).

Continue reading “Mast Cell Activation Syndrome” →

Hemolytic Anemia & G6PD Deficiency: How I survived intravenous corn derivatives.

If you’ve ever read my posts on ER Safety, Hospital Safety, or the Hidden Corn- Medical Supplies post, you probably know that blood transfusions contain corn derivatives. I’ve known this a while and made plans for eventually having to have an emergency treatment that would require corn exposure in order to save my life. But I had always hoped it just wouldn’t happen to me. But of course it did, last July.

Continue reading “Hemolytic Anemia & G6PD Deficiency: How I survived intravenous corn derivatives.” →

Why is a Corn-Free Diet so Limited?

Over a year ago, someone commented on my post detailing the challenges of finding corn-free meat by asking why one would not become a vegetarian instead of going to all that trouble.

My diet, and the diet of many people with corn allergy, is so limited that that would be a guarantee of malnutrition. I already fight malnutrition constantly. Adding an extra limitation beyond what I am already dealing with sounds downright dangerous.

This comment was written on a blog that is literally about how challenging a corn free diet is, on an article that goes into depth on just one single aspect of how challenging it is. Either I’m not conveying the magnitude of the problem well, or the person writing didn’t bother to try to understand the problem before offering a solution.

So here’s one more attempt to explain it.

Why is a corn-free diet so limited?

I do have a lot of challenges besides corn. But let’s pretend for a minute that my only issue was a severe, anaphylactic, airborne, and highly sensitive corn allergy. With only that:

    • I would be unable to eat almost any food from the grocery store, even whole organic produce, because of the possibility of corny packaging, organic sprays containing corn derivatives,  waxes, and cross contamination. People with a more moderate sensitivity to corn will still have many challenges finding foods in the grocery store that they can eat safely. In fact, those that can eat some foods but not others from the regular store have more to keep track of than those for whom this just is not an option.
    • This includes being unable to use pre-ground flours or any grains, beans, nuts or seeds that have been shelled, husked, or cleaned using machinery. Because of growing practices, threshing equipment, and packaging, dry beans are incredibly hard for those with corn allergies, even moderate ones, to find. I don’t think anyone has found a brand that works for many super-sensitive people since the Straw Hat beans changed the threshing equipment they were using. Some of us are using local farms who either sell us the dried beans in pod, or get fresh beans and dry ourselves.
    • I would be unable to tolerate almost most–or possibly any–vegetable oils. Most super sensitive people can tolerate Jovial olive oil, but some people even react to that and have no safe vegetable-based oil. Those people use the fat rendered from their safe meat, and this is one of the reasons why meat is such an important staple to us. Otherwise all our food is broiled, baked, and braised dry. Those that tolerate several vegetable oils still have dozens they can’t use due to contamination.
    • Because of this, I would need to carefully cultivate a network of farms, local and mail-order, who grew completely no-spray produce. If the farm is mail-order I need to negotiate safe handling and packaging in transit. Even the less sensitive need to exercise care in where their produce comes from and what is done to it. For example, citric acid washes and gas ripening cause problems for many.
    • Since very few (or zero, if you’re in a cold climate) crops grow year-round, I would need to preserve what food I can eat while it is available so that I can eat it the rest of the year. This is something many people with a corn allergy need to do to some degree, not just the super-sensitive.
    • This preservation would take about 4-8 hours a week of my time throughout the year, depending on the season. This is one area where sensitivity will determine how much stockpiling you need to do, but then again your average person doesn’t need to do this at all.
    • In addition to the actual preservation work, I would need to spend at least 8 hours a week year-round researching new sources of food, creating backup sources of food I already have and trying to track my nutritional intake to prevent against malnutrition, and keeping up with product changes and what things the corn allergy community are reacting to or doing well with. When one is new to the allergy or has had a sensitivity uptick, the time spent is often much, much more. Many people spend years feeling like all they do is research how to eat food safely. This is true across all levels of sensitivity.
  • Oh and also work a full time job, either inside or outside the home. I am counting stay-at-home-parenthood and caring for oneself as a disabled person full time jobs.

That’s a lot already. And many of us are dealing with other intersecting health issues that limit our dietary choices or ability to prepare or afford certain foods.

Continue reading “Why is a Corn-Free Diet so Limited?” →

Ehlers-Danlos Syndrome Awareness Month: My Life as a Zebra

May is Ehlers-Danlos Syndrome Awareness month, and this is one of the rare diseases I am diagnosed with. So I’m taking a moment to depart from the topic of corn allergy to give you some info about it.

eds awareness

Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders. EDS causes weak or defective collagen, which can affect many systems within the body- basically anywhere you have connective tissue. There are many types of EDS, and all of them involve joint hypermobility (double-jointedness), fragile tissue, and fragile/easily-bruised skin. Some types of EDS such as Vascular Type can cause arterial or organ rupture because the connective tissue of the organs and veins are weak.

There are 15 types of EDS, which you can learn about in detail from the Ehlers-Danlos Society.

The type I have is Hypermobile Type, which is the most common type. As of 2017, there is also a related condition, Hypermobility Spectrum Disorder, which is even more common than hypermobile type EDS.

Two things I would like to point out about hypermobility:

1) It is possible to be hypermobile without being flexible. 
Hypermobility has to do with how well your ligaments hold your bones together, while flexibility depends on the ability of your muscles to stretch. In many people, especially older hypermobile people, you may lose flexibility due to joint damage or muscle tension as the muscles try to hold the loose joints together.  Here’s a writeup from Yoga Dork that I think explains the difference well.

2) It is also possible to be hypermobile without having adverse symptoms from it. 
I often feel like this just means you don’t have adverse effects “yet” but I can allow for other viewpoints.

Continue reading “Ehlers-Danlos Syndrome Awareness Month: My Life as a Zebra” →

Hospital and Medical Safety With a Corn Allergy

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Updated 2/21/2017bl

I’ve written a bit about how to stay safe in emergency situations, but not about longer hospital stays and planned surgeries. There’s no possible way for me to cover every possibility, so the best way to stay safe in a medical context is to familiarize yourself with where corn hides in medical supplies, in food, and in medications, and familiarize yourself with the list of ingredients commonly derived from corn and if possible train a family member or loved one on these things so that they can help advocate for you.

Here are just a few suggestions for staying safe in a hospital setting. This document is very much work-in-progress, but I feel it’s important to share as much as I can think of  as soon as I have time to rather than continue waiting until I have time to be complete.

Create an Advance Healthcare Directive

If you are an adult, and you are conscious and of sound mind, you legally should always (to my knowledge) have control of your medical care (or the medical care of your dependent child). However if you are unconscious, or are deemed not to be of sound mind, someone else can (and will) make decisions regarding your care for you (or your dependent). Claiming to have adverse reactions to such commonplace ingredients such as citric acid and dextrose, or displaying fear of just about any and every medication, can seem like paranoia to physicians. It unfortunately HAS happened that those with corn allergies have been treated with psych medication instead of antihistamines, or been given medication that they had severe reactions to while they were unconscious or unable to advocate for themselves.

There is no way to guarantee that this won’t happen, but creating an advance healthcare directive, or living will, can help. Here’s more info on how to do that. What you put in that advance directive will be individual. Please do this as soon as you are able and well ahead of any planned procedures, and work with your team of medical professionals as well as your trusted corn allergy resources on the correct content.

Wear A Mask

If you are airborne reactive this is a must. If you are not usually airborne reactive, have a mask anyway, because it is likely you will be so bombarded with allergens in the hospital that you may become airborne reactive where you usually aren’t. You can find out what masks I use on my product list page.

Negotiate Safe Meds

Get the NDC # for any medication they want to use. This is found on the package insert. The paper package insert has the inactive ingredients somewhere on it, but it is hard to find in all that tiny print. Rather than scouring the inserts, look the NDC # up on DailyMed and skip to the last section, “Ingredients and Appearance.” There should be a section on inactive ingredients which you can cross reference with the corn derivatives list. 

I’ve also made a google doc spreadsheet available containing some of my findings on medications. This list was using for open heart surgery for someone, so it isn’t exhaustive of every possible med you would ever want to use. It also was done basically in one night on an emergency basis, so it is really just my off-the-cuff response after eyeballing the ingredients list. However it is a better starting place than nowhere.

When negotiating safe medications, consider not discussing corn. Explain that you have a history of allergic reactions to “excipients and preservatives” in medications, and that you really need your meds to be preservative free for your safety.

This includes premade saline flushes for iv lines. I found that out the hard way when I was recently admitted to the hospital.

When You Can’t Negotiate 100% Safe Meds, Pre-Medicate

I recently had to have blood transfusions, and not only is there  corn in blood bags as well as plasma, but reactions to blood transfusions are common even in those without allergy problems. This was scary, but I didn’t have a choice. I needed blood. The hospital admitted me even though transfusions are typically an outpatient procedure, and we agreed on a premedication protocol before proceeding with any transfusions.

If you need to receive blood transfusions, plasma, or any other procedure that may cause you to react, or if you need to take a medication for which you cannot find a corn free form, you just have to take medication to help prevent severe reactions, and remain under observation so that any reactions can be treated.

You will want to consult with your doctor on the right premedication protocol for you. I use a version of what The Mastocytosis Society recommends. I do have MCAS, however those who have “just” allergies and not mast cell disease can follow mast cell protocols with quite a bit of success.  That protocol is:

  • Corticosteroids, either intravenous 2 hours beforehand (if  this needs to be done right away), or orally starting 2 days beforehand (if you have time to plan).
    • If you receive an injection of steroids before a procedure, you need a taper of steroids to begin after the injection wears off to account for biphasic reaction or further irritation from the medication or procedure.
    • The length of the taper will depend on the procedure and your particular reactivity. Consult with your doctor.
    • For me personally, my preferred steroid injection is solu-medrol (methylpredisolone sodium succinate powder for injection- mixed in water only, no ethanol). I find it to be far more effective than prednisone. Dexamethasone might be a good option, but I am unable to take it due to my g6pd deficiency.
  • Intravenous or intramuscular benadryl  25-50 mg 1 hour before and 25-50mg IV, IM, or orally every 4-6 hours after  until chance of reaction is passed. (This may be several days depending on the procedure or medication.)
    • This needs to be intravenous or intramuscular if at all possible because it is much more effective than oral.
    • Hospira brand is safest for me diphenhydramine hcl for injection is safest for me.
    • If you are concerned about having a reaction to the benadryl or an ingredient in it, wait until the steroids have kicked in, and choose intramuscular over intravenous as it will “mute” the reaction somewhat.
    • You may be able to use another strong H1 antihistamine such as hydroxyzine if you cannot use benadryl. Consult with your doctor.
  • Oral, intravenous, or intramusculer H2 antihistamine (pepcid 40mg or zantac 150mg) 1 hour before and every 4-6 hours after until chance of reaction has passed.
    • This increases the effectiveness of the benadryl (or other h1 antihistamine).
    • This is less of a big deal to do IV or IM, and can be oral. Meaning if you can’t find a safe injectable version, ask the hospital staff to allow you to take your own H2 if you have one.

All meds should of course be prervative free and corn free.

Cook Ahead

If you have a corn allergy, it’s highly unlikely that you will be able to eat any hospital food, even if they swear they can cook you something corn-free. Most people, not even medical staff, just cannot understand what “corn free” is to the degree that we have to avoid it. If you know you are going to have be inpatient, cook yourself enough meals in advance to cover your planned stay and then some, and keep it in the freezer. If you don’t have a lot of freezer space, consider investing in a separate freezer. Even in an apartment it’s likely you can make room for at least a small freezer. You can likely create some vertical storage shelving above it to reclaim some of that space. (I originally said you can store stuff on top of it, and then found a TON of manufacturer advice not to do that because it interferes with venting!)  If money is a concern, you should be able to find used freezers on craigslist, although you’ll possibly need to do some work to decontaminate it since it may have had unsafe food in it. (I realize that *any* money is still money that many of us don’t have, and I totally understand and sympathize- I’m just making my ideal-world recommendations.)

As far as what to cook ahead, that depends on your preferences and safe foods. I honestly haven’t found too many things that I eat that don’t freeze and reheat well, maybe cooked eggs (which I personally am allergic to) and some types of dairy products such as cream and un-melted cheeses may get gross. When cooking for hospital visits, probably go with things that are easy to chew and somewhat bland as if you aren’t feeling well you may not enjoy chewing or spicy items, and even consider freezing or canning (more on corn-free canning here) some plain bone or meat broth in case you’re feeling too ill to tolerate anything else. I try to keep bland soups, baby-food style meat purees, broth, and fruit purees on hand for illness or a possible hospitalization.

You will need to get permission from the hospital to bring your own food. Be polite but firm about this- it’s not optional. You will also need to arrange for a place to keep frozen food and a way to reheat it.

Pack Ahead

Create a “hospital bag” (or in my case a suitcase) that contains everything you need for a hospital stay. The exact contents will depend very much on your sensitivity and needs, but I would err on the side of over-preparing, as you may find that in a hospital context, your reactivity and sensitivity ratchets up quite a bit.

Here is what is in my hospital bag:

  • 3x Twin Sheet Sets (I will react to the laundry detergents used by the hospital so need to bring my own clean bedding)
  • 3x spare twin fitted sheets (You may sweat, bleed, or otherwise soil the sheets in a hospital context, so bring spares!)
  • 2x Vog n99 Carbon Filter mask *with* head strap accessory.
  • 2x Extra mask filters (I use I Can Breathe  removable filters inside my vog mask to “double up” and help protect from airborne reactions better.)
  • 1x 3M Half Facepiece Respirator with  the  3M 60926 Multi Gas Filter Cartridges.
  • 4x hospital gowns (washed in my safe detergent)
  • 4x hospital socks (“hospital socks” refers to the kind with the treads on the bottom so you can’t slip)
  • 2x allergen pillow cover
  • 2x blanket
  • 3x panties (probably I could stand to have more, who knows how long I’ll be in there)
  • 6x cloth menstrual pad
  • 3x cotton lined waterproof mattress pads (mostly for sweat, I hope, but who knows!)
  • Towels, washcloths
  • body soap/dish soap
  • baking soda (For brushing teeth, washing hands, cleaning “whatever” – I use Karlin’s Finest)
  • shea butter (dry skin or lips, NOW brand is safe for me)
  • jojoba oil (dry skin or lips, NOW brand is safe for me)
  • hand soap in pump bottle (this is largely for setting in the room for nurses and visitors to use instead of the corny stuff)
  • phone charger (with a nice long cord so you can use it from bed while still plugged in)
  • coban tape
  • t-shirt sleeve for under pressure cuff (many react to the sanitizers used on the cuffs between patients)
  • Safe plate, bowl, spoon
  • HEPA filter (run in your room constantly and request the door be kept closed)
  • plastic tub to use as a dish washbasin
  • Safe water filter or safe bottled water (many corn allergics react to tap water or certain brands of bottled water such as Dasani)
  • safe sippy cup  with straw (if you’re sick you’ll spill- heck, I spill when not sick. I use a mason jar with a silicone koozie, a plastic sippy lid, and silicone straws)
  • 3 days worth of all daily & rescue medications.  (The hospital will not want to allow you to take your own medications but if you use the instructions above to check for corn in the medications they want to administer, and cannot identify a corn-free option, they may allow you to take your own if you calmly and rationally explain to them that you are likely to react to the excipients and preservatives in the medications they have on hand.) 

Laminated Signs

At shift changes, nurses don’t always carefully read every patients’ chart, and may mix up and forget individual patients’ needs. Hang signs anywhere there is a hazard for you to help reduce the chance of them doing something that will make you react. I have a home laminator and have pre-printed laminated signs in my bag. You can certainly use neatly hand-written signs though. But better to come up with what you need in advance than scramble while sick/injured.

  • No HAND sanitizer sign for front door
  • Keep Door Closed sign for door
  • Mop Floors with Water Only sign (consider getting translated into some commonly spoken local languages in case the cleaning staff do not read english well)
  • small do not use signs for hand soap & sanitizer
  • NO DEXTROSE NO GLUCOSE NO CITRIC ACID NO LACTIC ACID sign for iv pole

More Resources/Links

ER Safety with a Corn Allergy

ER Protocol for Mobile Devices

List of Commonly Corn Derived Ingredients (Corn Allergens List)

Hidden Corn – Medical Supplies

Hidden Corn – Food

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Currently Available Low-Cost Epipen Alternatives Are NOT Safe!

 

In an emergency, an manual draw epinephrine injection kit is NOT an appropriate replacement for an autoinjector.

Additionally, the syringe based auto injectors such as Adrenaclick are NOT an ideal sub for a cartridge based autoinjector!

A cartridge-based autoinjector is the SAFEST and most SURE way to save lives in an anaphylactic emergency, and carrying anything else could cost even more lives. As it is, fewer than half of patients in a 2015 study were able to correctly administer epiniphrine using the brand-name autoinjector.

  1. For people who are not medical professionals, draw time on a manual injection is too slow. Seconds count, and an average parent trying to inject their child takes two and a half minutes to draw up.
  2. If you have having even a moderate reaction you will be too compromised to inject yourself with a manual draw. Anyone who has ever fumbled around looking for their asthma inhaler, benadryl, or even car keys to get to those things, knows this from experience. Trying to draw up, remove air bubbles, and then *remove your pants* to inject yourself during anaphylaxis is out of the question.
  3. The syringe based auto injectors such as the adrenaclick may not deliver a sufficient dosage of epi.  The adrenaclick delivers only 25.7% of intended dose while the Epipen cartridge-based injector delivers 74.3%.
  4. Syringe based solutions, either manual or auto injection, cannot reliably be used through clothing. Thick clothing such as denim will bend the needle and must be removed or cut away, costing seconds that could be the difference between life and death.

Related posts:
MastAttack: No, using the manual syringe/vial method is NOT the same as using an epinephrine autoinjector

SciBabe: WHY YOU SHOULDN’T USE THIS METHOD TO SAVE MONEY ON THE EPIPEN

Corn Free Travel (Reprise)

[Updated 1/2018.]

It’s getting to be my travel season again, and while I haven’t solved most of my problems, I’m at least getting better at working around them.

My first travel post was in 2013 and was my first major trip since developing an intense sensitivity to corn, multiple food allergies, and becoming airborne sensitive:

Corn Free Travel: To Baltimore and Back Again

Since then I have traveled to:

  • Austin, Texas for the Housecore Horror Film Festival (yes, as in movies! But they didn’t serve popcorn so I could actually go!)
  • Oakland and San Francisco, CA (twice!)
  • Baltimore 3 more times for Maryland Deathfest
  •  NYC twice, for Martyrdoom, and also to hug friends.
  • Bend, Oregon for a specialist doctor.  (This got me my EDS diagnosis)
  • Minneapolis, Minnesota, for another specialist doctor.  (This got my my MCAS diagnosis.)

After a few trips like this, I am somewhat of an old hand at traveling. It doesn’t really get less awkward, but I just am more resigned to it. I refuse to quit living my life and doing things I enjoy just because my body is a jerk, so I am going to keep going through this effort and expense.

The topics covered in my previous post are still germane, and I still have a water problem that is not corn. I haven’t solved this water problem. I am still shipping my water ahead. Here’s a rundown of my travel “routine”:

Continue reading “Corn Free Travel (Reprise)” →

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. (Choose “PCAB Compounding Pharmacy” from the dropdown if in the USA, or “Canadian PCAB Certificiaton” if in Canada.)

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