Hi; DD is fragile atopic; the idiopathic uticatia dx was used to fast track xolair approval. Long story, involving immune dysfunction and NIH, but she’s on cell cept now and feeling better. That would not typically be a path for a fa kid.
To follow: for allergies she is on Zyrtec, budesonide nasal, pazeo, eucrisa, various topical steroids, dulera, spiriva, and prn duoneb, Benadryl, hydtoxyzine, epinephrine. Has hashimotos and iatrogenic adrenal insufficiency too. Plus pots and migraines. So, other meds for those.
Hugs, Michele! Your story is a great reminder that we are all unique, and each medication has its own risks and benefits that can differ from patient to patient. So glad she's doing better now, and I know the reaction had to be plenty scary!
So I believe this approval means it can be used in general as a protection against anaphylaxsis from food on its own and then also in conjunction w/ OIT. Anyone know if there is still a 6 year old age minimum? looking/googling
I also want to add that sesame is also used in bath and body care products. It and mustard are incredibly hard allergens to stay away from because they could be "natural flavors" or "spices." We don't buy any processed foods or eat at restaurants. Bakeries have sesame seeds everywhere!
As a four month old, my son was diagnosed with sesame allergy. We attempted a food challenge with his allergist at age three years. He had "severe life-threatening reaction" (doctor's words) to the smallest dose, equal to about one seed. Continuing to avoid all "natural flavor" and " spice" when companies will not disclose ingredients to us is difficult. Now, as an almost nine year old, he has never eaten in a restaurant. Navigating these school aged years is difficult and handling...
My 9 yr old son is highly allergic to sesame and had a recent near anaphylaxis reaction to sesame consumption from a salad dressing that contained sesame but sesame wasn’t declared as an allergen.If we ever go out to restaurants to eat he can’t take bread and anything with secret spices and sometimes as simple as pasta dish as sesame is being used more abundantly nowadays.Pizza also is tough for the most part as flour for dough may have traces of sesame.Its a shame that we are far behind the...
Have you had issues with undeclared sesame or sesame hiding in foods? We need your story to submit to the Food and Drug Administration (FDA) to prove the need for allergen labeling for sesame in the U.S. Send us your examples of the following to firstname.lastname@example.org . Foods with undeclared sesame - these are foods where a) “sesame” is not listed in the ingredients, and b) you confirmed separately that there is sesame in the product. Food labels where sesame is listed in the ingredients under an...
It is important to get rid of expired and unused medicine safely. National Prescription Drug Take Back Day is coming soon. There are several ways you can properly get rid of medicines, like epinephrine auto-injectors, prescription and over-the-counter medicines.
Genentech announced today that the U.S. Food and Drug Administration (FDA) has granted Breakthrough Therapy Designation for Xolair® (omalizumab) for the prevention of severe allergic reactions following accidental exposure to one or more foods in people with allergies. Breakthrough Therapy Designation is designed to expedite the development and review of medicines intended to treat serious or life-threatening diseases, and to help ensure people have access to them through FDA approval.
Parents work hard to teach their children with food allergies how to read labels and watch for reactions. But sometimes, the parents need a little help of their own. Austin helped his dad by making an anaphylaxis plan to help him manage his drug allergy.
Anyone else having issues with the generic epi not working? We are fighting for the brand so we know it works well for our daughter. She was in a panic when the generic epi wouldn't work. She is so afraid of them now. How can I get her brand if I have insurance? Thank goodness we were home to grab an epi pen I had in the kitchen drawer!
Yes, it would not fire. We tried both pens in the pack and neither would fire. I remembered I had epi pens I refilled in May before insurance made us go generic. I ran and grabbed them. It worked as always. My daughter still has bruises from where we tried to inject the generic pens a week later. I will never trust them again. Stef
Uh, just use a syringe? It's about twenty bucks, medicine included. Seriously, for a family that can't afford food if they purchase an auto-injector, a syringe takes a bit of training and provides the same medicine. Yes, an auto-injector is nice, but not everybody can afford it.
Hi Taric, Welcome to KFA. What food allergies do you manage? A syringe can be an option. However, in an emergency, it can be difficult to draw up the meds quickly. I was just talking re that w an er nurse the other day. But...still better than not having epinephrine for sure.
I have idiopathic anaphylaxis. I'm told it's a form of a mast cell disorder. All it means is that I can become anaphylactic to anything at anytime. Example- I just had knee replacement surgery. I had been taking my pain medicine less than recommended for about two weeks. When I took it the next time I needed it, I went into anaphylaxis. Another one is sometimes I walk out the door and I go into anaphylaxis. I do have known food allergies, but I avoid them. So anytime, anywhere. My kids have...
The end of last week, my doctor talked to the insurance. He got me brand epi pens back. But I am still only allowed a two pack every 23 days as their prescription plan does for all drugs. Errrr! Thank goodness my daughter and I use the same dose in epi's now. Doctor said to fill it every 23 days until I get three packs. Then replace as needed. Stef
That's an issue. She's out until I refill hers. The insurance is more lenient with kids. They know the school requires one with the refill tag on it as does the church, one at home and one on her. I keep her epi that stays home in my towel drawer. So kind of a built in back up. I couldn't believe when I picked up the recent brand refill, it was $600 before insurance. Stef Sent from my Verizon Wireless 4G LTE smartphone
This issue should not only take in account those who have a low income. The issue is that the cost of the epi is exorbitantly and greedily marked up by Mylan! It should be ashamed! The strain of paying for epi twin packs is there for everyone who needs it, and especially for families who have more than one member with life-threatening allergies. Moderate income families are always disregarded.
Im having problems finding an insurance company that will except the epi pens I have a deathly allergy to tomatoes and chocolate and sodium nitrates the Medicare and blue cross I have do not cover the epi pens at all so I'm stuck any advice you guys could give would be an amazing help thank you
Sabine - will the cover a different generic epinephrine autoinjector? You doctor has to specifically write the prescription for the generic ones. Otherwise, the pharmacy has to dispense the brand name.
Sabine, did you ever talk with your doctor and your insurance company to see if generic epinephrine autoinjectors would be covered? There are two versions of generic autoinjectors -- one company's generic version works exactly like their brand name version, from what I understand.
Apparently Express Scripts has decided that both the Mylan generic Epi and the Lineage Therapeutics epinepherine injector are "branded" medication rather than generic. Spoke with multiple customer service folks as well as one of their "pharmacists" and they are telling me no generic epinepherine auto-injectors exist although they are pushing me to the Mylan generic. The insurance coverage is of course significantly higher for generics but only if they treat a generic as a generic. Getting...
My insurance company sent me a letter saying they no longer cover Mylan Epi-pens as of next month, but supposedly they cover the generic. I looked up their formulary list. They cover Auvi-Q at 80%, which is worse than paying full price for the Mylan Epis. They don't cover Adrenaclick. In theory, they cover the Mylan generic. I'll have to leave extra time in August when I attempt to pick up the school's epis for pharmacist-allergist phone tag. GoodRx lists the prices of your various options...
I can't get a cost. My CVS says all epi's are recalled. Mine expires in May, but can't get any replacements. I'm told none are available. Anyone know if the expiration date can be stretched? I can't be without an epi, but can't replace it according to the pharmacy. Stef
The doctor said he did not know about the problem. Keep calling around. Apparently, Epi pens were recalled about three weeks ago. The pharmacies I spoke to will not sell epi pens until the new, post recall, pens have been sent to them. They do not want the liability. If you need an epi at this time, call 911. Stef
You're right - the pharma company websites aren't updated yet for 2018 and the coupons all expired 12/31/17. I'm trying to fill prescriptions now and don't have a valid coupon! How do I get an updated one?
KristaB, have you tried calling the contact number on the pharma company in question? They may be able to give you a timeline or a coupon that would work. Also, could you talk to your pharmacist or doctor? They may be able to reach out to their pharmaceutical reps for answers or a coupon, or even samples of some medications. I know that KFA is awesome about updating all this -- so keep an eye for updates.
Cynthia, No, I haven't called the pharma companies. My pharmacist is great though and he's on top of it. I wanted to see what he came up with first before trying to call pharma companies - that just seems like a runaround waiting to happen! I just found this site though, so I will keep checking back! Thanks!
The blog post was updated on Dec. 3, 2018, to include the following: Teva offers a generic version epinephrine auto-injector in limited areas in the U.S. It is available in 0.3 mg for $300 per two-pack. It will be released in larger quantities in the U.S., along with a 0.15 mg version, in 2019.
The manufacturers of epinephrine auto-injectors have extended their U.S. savings card programs through 2018.
Epinephrine is the only treatment for a severe allergic reaction known as anaphylaxis (anna-fih-LACK-sis). It is only available through a prescription by your doctor. Each prescription comes with two auto-injectors in a set. People with food allergies need two of these auto-injectors with them at all times.
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