Going to the Dermatologist with Alpha-Gal Syndrome

People with Alpha-Gal Syndrome tend to dread going to the doctor, and I am no different!

It’s because there are SO MANY problems you can run into when you’re dealing with medical professionals who have no idea what is Alpha-Gal safe and what isn’t.

Recently I went to the dermatologist for a red rash on my chin. Naturally, I had the rash for months before I finally scheduled an appointment, because I was hoping it would just go away on its own. Once I finally gave in and made an appointment, I worried about what drug I would be prescribed and how I would have to explain to yet another medical professional how Alpha-Gal Syndrome is so much more than just a red meat allergy!

Let’s just say I was pleasantly surprised the day I met Dr. Kim, my new dermatologist.  

Dr. Kim had heard of Alpha-Gal Syndrome and knew I would need my prescriptions needed to be mammal-free. She was very kind, and I was so thrilled to meet a medical professional that knew about Alpha-Gal Syndrome. It’s nice to go to the doctor and not be looked down upon or dismissed as a crazy over-the-top person with allergies!

But…that doesn’t mean the whole experience went smoothly. So I wanted to share the good, the bad, and what you can learn from it as someone with AGS!

Sticking to Alpha-Gal Safe Meds

One of my primary concerns when going to the doctor or dermatologist is making sure that any meds I am prescribed are Alpha-Gal safe. Unfortunately, a lot of common meds have mammal ingredients, so this can be difficult to navigate!

It turns out that I was showing signs of rosacea, so my dermatologist prescribed retin-A and an antibiotic cream. She double checked her database to be sure that what she ordered was safe for me as a patient with Alpha-Gal Syndrome. 

While I was there, I asked Dr. Kim to go ahead and do a whole body scan, because it had been over a year since I’d been checked out. She saw two small places of concern on my calf and suggested a biopsy. She was cognizant about reassuring me that the numbing agent was Alpha-Gal safe. 

I left the office that day with no allergic reactions and a smile on my face, despite the biopsies.

Prepping for Surgery

A few days later I got the dreaded call that the two spots on my calf were skin cancer that needed to be removed. Ugh! No one wants to hear that. While on the phone we discussed that I could not use catgut sutures and I kindly reminded my dermatologist that everything needed to be double-checked for safety. 

I made the appointment as soon as possible and asked my sweet husband to go with me. I need support and a second set of ears when it comes to medical procedures! I’m also a big baby and prefer to have a hand to hold when someone is going to cut on me. 

My husband is the best. He went with me and even held my hand while they did the first surgery. The spot on my calf was still red from the biopsy, so the doctor ordered doxy tablets for me because she knew that gelatin capsules wouldn’t work. She also talked to me about the stitching material that she would use. I would have both inner stitches and outer, with only the outer ones having to be removed.  

All went well and we scheduled the second in-office surgery to remove the second spot two weeks later, when they would remove the stitches from the first surgery.  

Dealing With an Allergic Reaction to Bandages

I walked out with 10 stitches on my calf and a nice-sized bandage. This is something that needed to stay dry for 3 days. After that, we had to change out the gauze and bandages to keep it covered for the whole 2 weeks. 

Do you know what I didn’t think about? Yep, you guessed it! I didn’t think about the adhesives in the bandages that would cover the wound.  

The initial bandages that stayed 3 days were no problem, and neither were the gauze and Vaseline covered with medical wrap. We used the self-adhesive compression wrap for the first few days. But I ran out of that after about a week and went to buy large bandages.  

Let’s just say that was a learning experience.

I had to use two of those knee-sized bandages. You know, the ones you use to cover the big boo-boos. After a day or two I noticed they were leaving a red rash. So I tried another kind of bandage. It did the same thing. I never imagined that I would have an allergic reaction to bandages, but sure enough!

Finally, about day 12, I went back to the compression wrap. The red marks seemed to fade but didn’t go away completely.

After the stitches were removed, my wound still needed covered. We headed to the beach for a 2-day vacation, and I continued to use the compression wrap. I guess my leg got hot while walking on the beach those 2 days, because went I got home the inflammation had worsened. 

And...the rash only continued to get worse. I tried bendryl cream. I tried cortisone cream and the rash only increased. I finally had to get extra strength cortizone cream from my dermatologist to get that nasty adhesive rash to go away.  

Who would have thought???

Just more fun things that go along with Alpha-Gal Syndrome…

Life With Alpha-Gal is a Learning Experience!

Living with Alpha-Gal Syndrome is tough. You do all you can to avoid allergic reactions, and sometimes you still end up having a reaction because you overlook one detail!

But, as stressful as it may be, I try to treat every incident like this as a learning experience.

I am so glad that I had figured out that many adhesive bandage brands are not safe by the time I had to cover the second incision. This time I went to the handy dandy AGS Facebook groups. I hit the search button and started looking for a safe bandage brand! 

While I can’t guarantee that these products are safe, others with Alpha-Gal have used these three types of bandages without having allergic reactions:

Personally, I found that I have an allergic reaction to most Band-Aide brand products. However, I have been able to use the Skin-Flex adhesives without any problem.

I sure hope that my experience gives you hope and insight in the case you need a dermatologist or an adhesive bandage!