Allergy to PEG scared!?

[Rissa_L]

Hey I’m new here, March 30 I got the first dose of pfizer and had anaphylaxis and went to the ER. I think I’m allergic to PEG but idk. But I’m scared to do a skin prick test since that can lead to Anaphylaxis as well. Is there anything in the vaccine I can blood test for? My allergist has been just testing me for foods but I’m having trouble sleeping and Eatting and even personal hygiene for over a month now In fear of being allergic to PEG or foods. Just been Eatting quinoa and avocado once or twice a day.. it’s getting harder everyday to cope..

[Rissa_L]

Also, what foods are safe? Because I’m having trouble and major anxiety and panic over the reaction I had..

[Shiloh1]

Dear Risa, I have a severe anaphylactic response to PEG and was diagnosed by skin prick at Johns Hopkins by a qualified immunologist. I reacted bur they were ready to treat me, and the reaction was minimal. There are, however, assays for blood samples that can test for anti PEG antibodies. A common one used in research labs is called ELISA, enzyme linked immunosorbent assay. It seems, however, such assays are not commonly available to the public, but a research hospital like Johns Hopkins likely has them. Search this site for other posts as I have tried to provide others what I know. PEG is hard to avoid as it is generally regarded as safe by FDA, goes by many different names, is in so many substances, and the medical community is not very much aware of its immunogenicity. Even if you have taken a medication before with no problem, manufacturers change formulations. You have to be your own doctor and do due diligence to check everything. I love people in the medical profession, but I have had multiple doctors who knew of my condition who prescribed me medications containing PEG. It is in toothpastes, glues, the white strip on razors, foods, medicines, cosmetics, etc. Approximately 72% of our population have anti PEG antibodies. I am trying to get the FDA to reclassify it, but the pharmaceutical industry relies to heavily on it, that is a challenge. The biggest problem with its being in the vaccines is not simply the allergic reactions, although anaphylaxis is life threatening, but that those with anti PEG antibodies are having an immune response to the vaccine itself, which reduces its effectiveness and can lead to vaccine induced Our immune system is a wonderful and complicated piece of work. That said, and to keep it simple, it was negligent to administer a population level vaccine to which we knew 72% of the population was allergic. I don’t know what state you are from, but you should call your congress person to inform him or her of this serious issue. You also need to ensure your reaction was reported to the CDC VAERS system.

[Rissa_L in reply to Shiloh1]

Thank you for a quick response! I didn’t think anyone would comment soon as I’m suffering currently.. I live in the NJ/NY area. My mom and I are trying to find a place who rests for glycols or PG or PEG. I don’t think I’d be open for a skin prick on PEG knowing I can go into anaphylaxis again but I might want to do that anti body blood test. For some reason it’s hard to find one in such a busy area... also I didn’t know it was even in razors! Guess I have to look for products in that area too. Lately I been looking for new shampoos, body wash, toothpaste, face wash, deodorants, now I guess razors lol. Do you have any tips or lists of things that help your hygiene? I’m also scared to eat foods.. knowing you have this allergy, how do you cope? This works depends on these sick glycols and It seems very hard!

[Shiloh1 in reply to Rissa_L]

Dear Risa,

I have to check everything. I have a medical bracelet, but it is next to useless as it doesn’t say “peanut allergy, latex allergy.) PEG is in so many products, I started an excel spreadsheet and got tired of adding products, plus they change often. I can take one brand of tylenol and not another. Same medication but different formulations. What really needs to happen is get PEG removed from the FDA classification as generally recognized as safe. Until that happens, those affected are stuck with protecting themselves and spreading the word.

So, pragmatic steps.

1. Tell your doctor and pharmacist to put your allergy in big bold letters in your records.

2. Research all products you typically use and ensure no PEG content. Many cosmetics use PEG as well. Once you have a list of safe products, stick with these products, but check periodically for formulation changes, especially with medications.

3. Be Your Own Doctor. Do not blindly trust. Trust but verify every prescription.

4. Ensure you have benadryl and an epi pen with you at all times. Benadryl does not stand up to heat, so you can’t just leave it in your glove box.

5. Get a medical bracelet. If nothing else, it might help your heirs win a lawsuit. I have found EMTs don’t know what to do differently with those with a PEG allergy, nor do ER room personnel.

6. If you are really ambitious, propose a protocol for your local hospital to deal with PEG sensitized patients. I did, but I don’t know what they did with it.

7. Never, ever be cowed by a doctor who does not take your allergy seriously. I have had multiple doctors prescribe me PEG containing medications after I specifically told them of my allergy.

8. If you have a spouse, enlist their help in avoidance.

9. Always be suspicious of aerosolized/vaporized substances. I reacted once to an HVAC flushing agent. Vape cigarettes, some, still use PEG.

[Rissa_L in reply to Shiloh1]

Thank you so much for this I’m so new to this and still finding doctors and allergists to test me on certain things. It’s a shame not many in the medical field take this seriously or know much about it as anything can happen because it’s so common. How is it like for you Eatting wise? I struggle and I’m scared to even make my own food and eat. But I know that’s the safest option. Eatting out or for an event must be very hard!

[missleb1281 in reply to Rissa_L]

Hi there - I live in NYC. Despite living in one of the biggest cities, it was very difficult to find a doctor to diagnose my allergy. I found an outstanding immunodermatologist at Columbia who was able to diagnose my odd allergies. He recently retired this past year but passed his caseload to his protege. Happy to give you more info if you need a doctor to help.

[Rissa_L in reply to missleb1281]

I would love to get in contact with the person in Columbia if u can provide me that info!

[missleb1281 in reply to Rissa_L]

Email me at [e-mail] and I’m happy to share all the info I have!

[kerrykuzak]

I'm so very sorry you're suffering right now, but it will get better. If you would like a copy of my paper, "Living with a Propylene Glycol/Polyethylene Glycol Allergy", e-mail me at [e-mail]. Best wishes.

[Rissa_L in reply to kerrykuzak]

Thank you, I will!

[Nanka_ in reply to kerrykuzak]

I am sending you an email also, please send me a copy.

[Ang9259 in reply to kerrykuzak]

Can you please send me a copy as well? I will email you.

[FiddleFaery7]

Hi Rissa, I'm so sorry you had such a traumatic experience. It's perfectly understandable why you would not want the skin test. I hope you find a place that can do the assay for you!

As for hygiene products, do ALWAYS read all labels carefully, and be aware that formulas often change in products. I recently discovered Dr. Bronner's products. I am not as strongly allergic as you, but just switching out my old walmart brand body wash and Kirkland (costco) laundry detergent helped my skin feel better almost immediately (the vaccine caused me to break out what looked like chicken pox and then hives).

Be careful, too, about touching anything when you are out and about, and I know I now avoid gel hand sanitizer like the plague (immediate itchies and red, what look like bug bites on even my palms). I didn't realize how much PEGs are all around us until I started reading labels.

Best of luck!

Nicole

[Rissa_L in reply to FiddleFaery7]

Thanks for the reply, and yeah I’m trying to take it day by day. If u domt mind me asking what hand sanitizer u use because you get reactions to different ones?

[Ang9259 in reply to Rissa_L]

I use Honest Company hand sanitizer spray and I do fine with them. Check them out!

[FiddleFaery7]

So far, I have not found one without PEGs, but it's the gel ones that make my skin so irritated. I stick to washing my hands with soap and rinsing well. Check soaps, too.

[Nancy2k]

It's very hard to adapt at the begining.

Bracelet :it write ANAPHYLAXY to peg and i add some synonym

Fresh and simple food

I make my own moisturising lotion and soap.

I buy bio product with list of ingredient

I stop a lot of product i liked to use before.

I did experimented a lot of reaction and learn of it.

For me its only peg (im ok with pg). I tolerate low molecular weight like peg 10 and peg 80. I try to avoid if it possible.

Big molecular weight like peg2000, peg3350, peg 4000 make me anaphilaxy.

I receive astrazeneka. I can also receive janssen for the secund dose.

Keep your epipen and claritin without peg on you.

Take care to the synonym

If you need to take pills or other medic, cross each word of medicinal and non-medicinal ingredient with polyethylen glycol on google and become friend with your pharmacologist

You will learn and get more secure with time and it will be easyer.

My allergologist told me good luck😂

So i hope that to you too.

Sorry for the fault. I speak french.

[Jacquie7]

Hello Rissa,

Sorry to read about your anaphylaxis it sure is scary to wake up an realize you need to avoid all products, where do you go, what do you do. My husband had his first anaphylaxis and the end of a heart cath procedure in a vascular closure. The Surgeon told me to go home and get rid of everything that contains PEG and kept him in the hospital for 2 nights. In the early days and months, I began in the bathroom, threw away trash bags full of products, researched on the internet, Life without polyethlene gycol webite helped me alot, did the excel spreed sheet and came up with his drug list going back to 2010, I kept all the drug receipt for tax reasons. I ended up taking him to Ohio State University Wexner Medical Center and had a Patch Test done by a Dermatologist. Even though he did not preform a patch test for PEG he did test for many natural and synthetic chemicals, Dyes and Metals. Latter that year, his medical Doctors wanted him to go to an Allergist. It seems like a football team, one team don't agree with the other team and we have to pay for it. We did go to Cleveland Clinic. They didn't believe the patch test and wanted to do their own testing and get my research. He did not want the prick test for fear of another reaction and so they wouldn't help. The patch test showed he was allerigic to 14+ natural and synthetic chemicals, metals, PG was tested positive. The DX asked how do you eat? After 30+ years of marriage I couldn't figure out what to feed him. Here he is allergic to fruits and vegetables among many other chemicals. He's allergic to just about everything. One DX want him to go to John Hopkins and get tested for Mast Cell. Currently, I don't know how to live safely. I do recognized the symptoms when is get having a reaction. His reactions can happen immediately and be delayed by weeks to months. The DX told me to watch his breathing, if he is having a reaction causing him breathing problems that the time take him to the ER, other than that we have two eppi pens the Parm said he would need both shots if having a severe reaction. I hope I never see that day again, the day the surgeon said he never seen anyone get so red, he saved his life. Today he get all his medicine compounded, trys to keep moving and enjoy something. He is disable due to physical degenerative issues they wouldn't recognize his allergy. He did have a neck fusion in December the surgeon made sure no PEG and was successful, he also had an colonoscopy successfully, but he says no to the Covid Vaccine, but hopefully waiting for a compound.

May the Good Lord place his hand on you and guide you in peace. Try to stay calm and get some sleep.

Blessings,

Jacquie

[Rissa_L in reply to Jacquie7]

Hi, Thank you for the response and I’m so sorry you and your husband have to go through this. I know how tough it is even though I’m just starting out to find answers and do research. Eatting does seem very hard. Actually recently I been just Eatting avocado and quinoa and I think depending on the avocado my tongue feels weird! I think I need to start getting organic and wash it DEEPLY... I also do not know how to eat and that’s all I been Eatting. How do you and your husband get around that? Also yeah I haven’t took meds because I’m also scared. I have acid reflux and was told to take pepcid and got a prescription but I don’t know what’s in it so I haven’t took it. I should let all my doctors know and my pharmacy about peg and pg so they can change all my meds to not have it possibly... really does seem hard. Everyday I’m searching up hygiene products as well because I don’t know what I would and wouldn’t react to. Some part of me feels like I wish I stayed in a hospital. Seems like the only safe place I can be. Get nutrients from an IV... in case something happens I’m already there don’t need to call the ER... I live in NJ NY area and haven’t found any answers yet.

[Jacquie7]

Hi Rissa,

Food is a big issue. No restraurant food, fast food, no process food. All he can eat safely is Pears, Carrots, Celery, Onion, Potatoes, Sweet Potatoes, Garlic and peanuts. Oats and Rice. No green vegetables, no tomatoes, no avocado, No spinach, No bannanas, No apples & Oranges, no tree nuts, no beer, no wine, no sodas the list goes on and on. He has suffer gerd all our married life and it's because he is allergic to them. Meat, eggs and Potatoes is all he ever wanted. I have the allergy list on my hub if you want to see the correct allergy names. When I found out that the flour has PEG in it "that's why our bread don't mold" I stopped buying all process food. Sometimes I will for my son, but he'll get flu like symptoms immediately, he has the sensitivity too, I know its in it, I have researched Dow, Dupont and industries that make the stuff, they don't even have to label it and something you always had can change, because of a bad batch of the PEG, that's why there are so many recalls on food and medications. Longer shelf life for the products, that's why the industry uses it. Read the labels if you don't know a word, don't buy it. One time, I found some extra strength tylenol the store had discounted to get rid of the old stock. It didn't have it in, I was so excited to take it home for his pain.

Beware: "You will look at the whole medical field different as you move forward."

For your medication look up your DNC code and Try (dailymed.nlm.nih.gov/dailym... to search for your medication inactive ingredients, you might have to find a compound pharmacist to make your medicine they will also research you medication. My husbands blood pressure med cost about $36 a month. and they were able to help with medicine for his surgery, and the surgeon was find with that and gave the order, the hospital never gave us any issue bringing in our own pain medicines, how could they after they saw his allergy list.

Hang in there,

Jacquie