Hospitalization and Surgery with AGS

What’s it like to be hospitalized or undergo surgery with AGS?

Surgeons, anesthesiologists, hospital pharmacists, and other critical players often do not understand how commonly drugs, other medical products, and medical devices used in perioperative care contain alpha-gal. These include, but are not limited to:

  • Tens of thousands of drugs, including those administered pre-operatively, perioperatively, and post-operatively
    • Of special concern are cetuximab (a drug that played a role in the discovery of AGS), infliximab, pancreatic and other enzyme replacements, like some magnesium stearate, and many
    • Often alpha-gal is in inactive ingredients, such as gelatin capsules, stearic acid, lactic acid, lactose, glycerin, and gelatin.
    • Many manufacturers do not report, or do not know, the full lineage of all substances used in their products.
    • Manufacturers do not report alpha-gal content in their package inserts.
    • Manufacturers do not test their final products for alpha-gal.
    • Inactive ingredient information can change at any time, and the FDA does not require manufacturers to disseminate this information.
    • The same drug from different manufacturers, in different preparations, and even different batches may be safe in one instance and not in another.
    • In many cases, the ultimate source of a substance, such as lactic acid (which can be plant- or animal-derived) cannot be determined.
  • Numerous vaccines, including (but not limited to) some herpes zoster, MMR, varicella, yellow fever, oral typhoid, and influenza vaccines. Vaccines containing gelatin, in particular, a problem and can induce anaphylaxis in some patients.
  • Heparin
  • Some volume expanders, such as Haemaccel, Gelafundin, and Gelofusine.
  • Some antivenoms, including both snake and spider antivenoms
  • Some recombinant human coagulation factors
  • Catgut sutures
  • Biologic mesh
  • Bovine pericardium
  • Some medical devices, including bioprosthetic heart valves
  • Some hemostatic agents
  • Some topical agents
  • Some bandages and adhesives
  • Some lubricants, such as those used in colonoscopies and gynecological exams

Healthcare providers often do not appreciate the severity of our reactions.

  • Over 60% of people with AGS have anaphylactic reactions to alpha-gal.
  • AGS is the number one cause of anaphylaxis in some regions of the U.S. and a major cause of anaphylaxis in others.

Healthcare providers often do not appreciate the risk that airborne particles of alpha-gal can pose to us.

  •  Many people with alpha-gal syndrome react to airborne particles of alpha-gal, such as fumes from cooking meat.
  • Our reactions to fumes can come on quickly (within minutes) and be life-threatening.

Hospital nutritional services usually are not able to provide us with safe food.

  • In addition to mammalian meat, meat products, dairy, and gelatin, numerous foods contain mammalian products and byproducts, especially processed foods.
  • Cross-contamination of food with mammalian meat or other mammalian products can cause us to have life-threatening reactions. We know of at least one fatality from cross-contamination.

If you are a healthcare provider, we ask you:

  • Would you intravenously administer a drug containing peanuts to a patient with a peanut allergy?
  • Would you expose a patient with peanut allergy to airborne particles of peanut, often in their own room?
  • Is it reasonable to expect patients to obtain lists of ALL the drugs, medical devices, topicals, bandages, sutures, etc. that will be used during their hospitalization–often with little cooperation from physicians,  pharmacists, and hospital staff, and then, on their own, research their safety? Do you believe most patients are capable of doing this?
  • What do you think of patients and sometimes ER physicians asking strangers on Facebook which medications and medical products are safe for them, while they in the hospital in the midst of a medical crisis? This happens every week.
  • Should patients require a family member to attend to them at all times, standing by, ready to administer rescue medication brought from home, in case hospital staff administer a drug that causes an anaphylactic reaction and can’t determine whether any of the hospital-provided rescue medications are safe?
  • Is it reasonable to expect patients to have food brought to them by a third party, or else starve, for the duration of their hospital stay, because they cannot obtain safe food from nutritional services?
  • If the answer is no, you need to understand that currently, this is the norm for many of us. Please read our stories and help us change this!

What Hospitals, Hospital Pharmacies, and Healthcare Providers Can Do

 

Familiarize themselves with AG.
  • Educate all relevant providers, especially in areas where AGS is most common.
  • Reading Diagnosis and management of patients with the alpha-Gal syndrome by Thomas Platts-Mills and the Up-to-Date article on AGS, written by Scott Commins, MD, PhD, is a good starting place.
  • This website has a comprehensive AGS research reference including all or most of the research on AGS.
  • Understand that reactions to alpha-gal can vary, depending on route of administration, the amount of alpha-gal the patient is exposed to, individual variations in reactivity, and other, poorly understood co-factors.
  • Understand that unlike typical allergic reactions, reactions to orally administered alpha-gal can be delayed by hours.
Develop and maintain a formulary specific list of medications and their alpha-gal content.
  • Compile alpha-gal information about as many drugs as possible in order to guide perioperative prescribing.
  • Maintain an active list of commonly used perioperative medications and their alpha-gal content.
  • Update these lists as formulations change and/or more information becomes available.
  • Since alpha-gal content varies from manufacturer to manufacturer and even between lots, lists will vary from institution to institution, depending on suppliers.
  • Be sure to include topicals, bandages, tapes, and medical devices in this database.
  • Click on this link to see an example of how Duke is approaching this issue. Note that this list may not be current and that alpha-gal content can vary from manufacturer to manufacturer and lot to lot. Alpha-gal Content for Select Medications Per Manufacturer
  • In the absence of a hospital database of information about the alpha-gal content of medications, the Robert Wood Johnson University Hospital Drug Information Service at njdruginfo@rwjbh.org, 732.937.8842. This service is provided by volunteers, M-F 8:30am-4:30pm.
Educate, and develop resources for, nutritional services.
  • Provide training about alpha-gal safe foods and methods of food preparation.
  • Provide training about reactions to airborne particles and how to avoid them.
  • Provide materials, such as checklists of safe foods (ingredients, condiments, cooking oils) and methods of food preparation (shared utensils and pans, etc.)
Work with Electronic Medical Record Providers.
  • Work with EMR providers to have “galactose-alpha-1,3-galactose” added to their bank of possible allergens.
  • Pharmacy and nutritional services should update these banks regularly.
Properly identify patients with AGS.
  • Develop a means of clearly identifying patients with known AGS.
  • Patients with a history of hypersensitivity to cetuximab or mammalian meat should be treated with appropriate precautions.
  • This website has information about the diagnosis of alpha-gal syndrome.
For patients identified with AGS, take the necessary precautions.
  • Clearly and specifically document allergy to galactose-alpha-1,3-galactose in the patient’s medical record and charts.
  • Ensure that all pre-operative, perioperative, and post-operative drugs, and other medical products (see above) are safe for patients with AGS.
  • Ensure that all relevant providers, for the entire perioperative period, including (but not limited to) those involved in anesthesiology, pharmacy, nutritional services, nursing, pre-op and post-op surgical units are educated about AGS and have access to the appropriate resources.
  • Convey to nursing staff the importance of their role in ensuring compliance with AGS guidelines during the entire perioperative period.
  • For patients reactive to airborne particles, take the necessary precautions to prevent exposure.

References:

1Dunkman, W. J., et al. (2018). “What Does a Red Meat Allergy Have to Do With Anesthesia? Perioperative Management of Alpha-Gal Syndrome.” Anesth Analg.

2. Pfutzner, W. and K. Brockow (2018). “Perioperative drug reactions – practical recommendations for allergy testing and patient management.” Allergo J Int 27(4): 126-129.

3. Caponetto, P., et al. (2013). “Gelatin-containing sweets can elicit anaphylaxis in a patient with sensitization to galactose-α-1,3-galactose.” The Journal of Allergy and Clinical Immunology: In Practice 1(3): 302-303.

4. Mullins, R. J., et al. (2012). “Relationship between red meat allergy and sensitization to gelatin and galactose-alpha-1,3-galactose.” Journal of Allergy and Clinical Immunology 129(5): 1334-U1217.

5. Kaman, K. and D. Robertson (2018). “ALPHA-GAL ALLERGY; MORE THAN MEAT?” Annals of Allergy, Asthma & Immunology 121(5): S115.

6. Chung, C.H. et al. (2008). “Cetuximab-Induced Anaphylaxis and IgE Specific for Galactose-α-1,3-Galactose.” N Engl J Med 358:1109-1117

7. Berg, E. A., et al. (2014). “Drug allergens and food-the cetuximab and galactose-alpha-1,3-galactose story.” Annals of Allergy Asthma & Immunology 112(2): 97-101.

8. Dewachter, P., et al. (2019). “Anesthetic management of patients with pre-existing allergic conditions: a narrative review.” Br J Anaesth 123(1): e65-e81.

9. Popescu, F. D., et al. (2019). “DRUG ALLERGIES DUE TO IgE SENSITIZATION TO alpha-GAL.” Farmacia 67(1): 43-49.

10. Swiontek, K., et al. (2019). “Drugs of porcine origin—A risk for patients with α-gal syndrome?” The Journal of Allergy and Clinical Immunology: In Practice 7(5): 1687-1690.e1683.

11.  Vidal C et al. (2016) Vaginal Capsules: An Unsuspected Probable Source of Exposure to α-GalJ Investig Allergol Clin Immunol 2016; Vol 26(6) : 388-389

12. Muglia, C., et al. (2015). “Anaphylaxis to medications containing meat byproducts in an alpha-gal sensitized individual.” Journal of Allergy and Clinical Immunology-in Practice 3(5): 796-797.

13. Akella, K., et al. (2017). “Alpha Gal-Induced Anaphylaxis to Herpes Zoster Vaccination.” CHEST 152(4): A6.

14. Bakhtiar, M., et al. (2017). “P66: ALLERGIC REACTION TO BOVINE GELATIN COLLOID: THE ROLE OF IMMUNOGLOBULIN E TOWARDS GALACTOSE-ALPHA-1,3-GALACTOSE: IMPLICATIONS BEYOND RED MEAT ALLERGIES.” Internal Medicine Journal 47(S5): 24-24.

15. Bradfisch, F., et al. (2019). “Case series of anaphylactic reactions after rabies vaccinations with gelatin sensitization.” Allergo J Int 28(4): 103-106.

16. Stone, C. A., Jr., et al. (2019). “Anaphylaxis after vaccination in a pediatric patient: further implicating alpha-gal allergy.” The Journal of Allergy and Clinical Immunology: In Practice 7(1): 322-324.e322.

17. Stone, C. A., Jr., et al. (2017). “Anaphylaxis after zoster vaccine: Implicating alpha-gal allergy as a possible mechanism.” Journal of Allergy and Clinical Immunology 139(5): 1710-1713.e1712.

18. Pattanaik, D., et al. (2018). “The changing face of anaphylaxis in adults and adolescents.” Annals of Allergy, Asthma & Immunology 121(5): 594-597.

19. Ankersmit, H. J., et al. (2017). “When meat allergy meets cardiac surgery: A driver for humanized bioprosthesis.” J Thorac Cardiovasc Surg 154(4): 1326-1327.

20. Hawkins, R. B., et al. (2016). “Premature Bioprosthetic Aortic Valve Degeneration Associated with Allergy to Galactose-Alpha-1,3-Galactose.” Journal of cardiac surgery 31(7): 446-448.

21. Kleiman, A. M., et al. (2017). “Delayed Anaphylaxis to Mammalian Meat Following Tick Exposure and Its Impact on Anesthetic Management for Cardiac Surgery: A Case Report.” A & a Case Reports 8(7): 175-177.

22. Mozzicato, S. M., et al. (2014). “Porcine or bovine valve replacement in 3 patients with IgE antibodies to the mammalian oligosaccharide galactose-alpha-1,3-galactose.” J Allergy Clin Immunol Pract 2(5): 637-638.

23. “Alpha-Gal Specific IgG Immune Response after Implantation of Bioprostheses.”

24. Fischer, J., et al. (2017). “Alpha-gal is a possible target of IgE-mediated reactivity to antivenom.” Allergy 72(5): 764-771.

25. Rizer, J., et al. (2017). “Acute hypersensitivity reaction to Crotalidae polyvalent immune Fab (CroFab) as initial presentation of galactose–1,3-galactose (-gal) allergy.” Clinical Toxicology 55(7): 668-669. Farooque, S. et al. (2018). Anaphylaxis to intravenous gelatin‐based solutions: a case series examining clinical features and severity

26. Lied, G. A., et al. (2019). “Intraoperative anaphylaxis to gelatin-based hemostatic agents: a case report.” J Asthma Allergy 12: 163-167.

 

Alpha-Gal (Mammalian Meat) Allergy: Implications for Pharmacists 2015-05-27 07:02:47 Indrani Kar, PharmD; Min Gong, PharmD candidate; Christine Muglia, MD; Catherine A. Monteleone, MD; and Evelyn R. Hermes-DeSantis, PharmD, BCPS 

More references coming soon

I have had two surgeries since I was diagnosed with alpha-gal. The first was a hip replacement, and the only drug that the doctor said needed substituting was heparin. He said he would use Lovenox instead. I researched and found that Lovenox is a low molecular weight heparin that is also pork based. He was convinced I was wrong, until I printed and showed him documentation from the manufacturer.

The second surgery was minor, but proved to be much more complicated. Although I had spoken at length with the surgeon and the surgery center in advance, alpha-gal was not properly notated with either (coding was incorrect both places), so the nursing staff didn’t know I have it or what it was, much less how to deal with it. During pre-op, I had to stop nurses from spraying a pain-freeze medication on me (they didn’t know the name of it, or what was in it). They then injected me with lidocaine prior to inserting an IV (before I realized what they were doing), and then taped the IV with a clear adhesive bandage. I reacted to one or both, but luckily it was just an irritating skin reaction that cleared within a few days.

After my incision was closed (while I was still under anesthesia), the surgeon applied an ointment that was only listed in my chart as “antibiotic jelly”, which I had a severe reaction to. Since I was instructed not to remove the bandage myself, but to return to their office the next day for a bandage change, I was not aware of how bad it was until they removed it. The incision developed a nasty abscess and became infected, requiring a strong antibiotic. In addition, the pain medication that they prescribed (in tablet form) I became sensitive to within 24 hours, beginning with hives over my entire body, airway irritation, and edema.

These experiences shine a light on just how pervasive our sensitivities can be in medical procedures, and why as patients we need to be aware of even the simplest things, such as topicals and minor injections. And until a time when all medical professionals are completely educated on the details of alpha-gal, we as patients have to watch out and speak up for ourselves.

Lee Ann Kendrick

I had minor back surgery in November 2018 and worked with the pharmacy and anesthesiology department at Robert Wood Johnson University in New Jersey to develop a safe protocol for me. I assumed that it would follow me into the recovery room… just to receive morphine in a solution that contained gelatin – went into anaphylaxis. Staff rushed to get the crash cart only to discover that nothing was cleared with the pharmacy department. I nearly died there were it not for the fact that my wife used my own rescue medication on me that she brought with her.

Marius Vermeulen

I requested a pre-surgery consultation with the surgeon and anesethiologist before an elective surgery for a very bothersome ganglion cyst that needed to be removed. My requests were brushed off and I wasn’t acknowledged until I was in the hospital gown and had an IV line in. I wanted to back out when I was told they didn’t know how to even find the NDC (serial) number on the box to investigate if it’s safe !! Thankfully I had a good anesethiologist who looked at my phone as I searched the alpha-gal Facebook pages for science backed researched safe drugs.

Everything turned out fine but it came down to some propofals (anesethics) being safe or not depending on their country of manufacture. Also, I had to have internal stitches and I had to confirm with the manufacturer that they didn’t contain mammal. If I didn’t have the monocryl or vicryl stitches, then I may have had constant anaphylaxis as the stitches broke down within me for around a month.

Medical professionals are typically not informed and aware of this. If you voice your concerns and advocate for your health,they refuse to do the surgery because of liabilities. It’s scary!
Also, we can be allergic to many pain meds for post surgery and I had to go without for a week before finding something safe. I’m glad that I have some surgical information ahead of any immediate emergencies in which I may not be able to communicate my needs.

Ashley M

I was involved in a car wreck in August of 2018. My first thought, when it was over and I awaited the ambulance, was fear on what the medical professionals would possibly give me for the pain. At the hospital there was nothing they could figure out on such short notice for me that was mammal free. The pain was excruciating for days, weeks and months to come.

I ended up having extensive surgery on my wrist and elbow December of 2018, due to injuries sustained in that car wreck. To say I was scared that I wouldn’t wake up, would be an understatement. I met with my surgeon and the anesthesia team weeks ahead of time. We gathered a list of things to cover during and after surgery at home.  The surgeon called in my prescriptions before surgery so that the pharmacies could order the exact medications (including manufacturer) that I needed, with strict instructions not to prescribe until the day of surgery.

I spent weeks calling pharmacies to find a pain killer and anti-inflammatory for once home after surgery. When you call the pharmacy about a prescription, the pharmacy will not know. You have to get the manufacturer name, plus the NDC number, and contact the manufacturer yourself for them to research it and get back to you. My prescriptions for after surgery required 2 different pharmacies, one being 45 minutes from my home. Both pharmacies had to specifically order that exact medication from that exact manufacturer with that exact NDC number on it.

Once at surgery the anesthesia team at Vanderbilt informed me that it took 3 weeks worth of researching extensively to ensure everything was allergy safe for me. They were very intrigued at my allergy and said they really enjoyed the challenge. I cannot thank the Vanderbilt team enough for taking this allergy seriously and not blowing me off as some will do.

 

Amber Roberts

I am being admitted to hospital. Came to ER w anaphylactic reaction. Is regular IV saline (no dextrose etc) ok? In the ER right now. Here’s a pic of the iv bag.

Dawn Wils, posted in an AGS Facebook support group