New Dermatographia: What is helping you?

Here is a link to a guide Dr Afrin co-wrote that out lines mast cell issues…it is excellent… https://www.ehlers-danlos.com/wp-content/uploads/MCAS-Primer-for-the-Gastroenterologist.pdf

Also, I take Beta Alanine, an otc amino acid supplement to kill the itch…it is typically used as a workout supplement. The dosing on the packages much higher than I need, I take 750 mg every four hours as needed…1500 mg before showering, which is a huge trigger for me…I buy it on Amazon…

Thank you for the link to an informative piece. I am going into month 8 of dermatographia, but my symptoms are 5% of what they were at the start (10 days after Moderna booster).

Glad I found this discussion. I have been dealing with hives since my Moderna booster. I am in month six. Has anyone had their hives stop? I had the esophagus tightness that my allergist thinks might be esophagus hives. Benadryl and Claritin did not work as well for me. Xyzal has been a life saver. It actually works for 48 hours for me. I still see the hives especially if I scratch myself. But the horrible itching is not there. I just wonder when this is going to stop.

Hello everyone. Almost three weeks ago, I had a terrible bought of itchiness that lasted about three days. I scratched and noticed when I did, a redness overtook and the scratch marks appeared. After 20 minutes, it was like nothing happened. I changed my soap, lotions, and opted for cotton clothes. The itchiness subsided and I was left with Dermatographia. Any scratch or unintentional brushing with objects and I have red marks. My hands can get dotted with red marks. It’s a nuisance so I booked an appointment with an allergist scheduled for later in July. I also noticed slight swelling on my hands and feet. I went to see both my PCP and a dermatologist. I already knew it was Dermatographia thanks to Google and started taking Claritin. That lasted for two days and I switched to Zyrtec. I’m extremely proactive. My pcp wasn’t concerned. She didn’t even touch me. I made her take my blood to rule out an infection. The dermatologist gave me the scratch test, said it was internal, that I was allergic to something and that the allergist would help me figure it out. I wasn’t concerned, annoyed, yes. Concerned, no. Then I got my bloodwork results. My doctor ordered an ANA which came back positive with a moderate titer of 1:320. It was noted that there was a “fine speckled pattern low prevalence in systematic autoimmune rheumatic disease,” whatever that means. Because the titer was moderate she advised me to see a rheumatologist. I booked an appointment. The earliest one is in October.

Here’s the thing, I feel GREAT physically. I jog 3 miles almost daily. If it wasn’t for the rash, this wouldn’t even have been on my radar.

I had the Pfizer vaccine in 2021, no boosters. Had Covid in April. A stomach bug first weekend in June (my entire household got it) to be followed.by this lingering nuisance which I thought was a nothing could be a something Is Dermatographia autoimmune because I have no other symptoms.

I’m starting a new job soon very soon. Am making sure my appointments are in the afternoons. If Dermatographia is brought on by stress (or emotions as my PCP suggested) then this will be cyclical as this is all a touch stressful.

Any advice/feedback is appreciated.

Welcome @evie777.
Dermatographia may be an autoimmune disease. Healthcare providers and medical researchers think it might be an inappropriate response from your immune system.

You'll notice that I moved your message to this active discussion about dermatographia that @jackographia started a little while ago:
- New Dermatographia: What is helping you? https://connect.mayoclinic.org/discussion/new-dermatographia/

I did this so that you can read through the previous posts and connect with fellow members like @hellopeeps @gnew92 @gnew92 @healingtree @reggiegirl and others.

I hope you were successful in making your appointments. What helps you to manage stress?

Hi Healingtree. Your last few sentences resonated with me. I have always been so proud of not being allergic to anything. Now I feel like everything is a trigger. And that change occurred three weeks ago! I feel your confusion.

Thank you for your insights @allergydoc . When you say that it takes 3-4 times normal daily dosing of second generation antihistamines, does that mean I have to take 3 Zyrtec? At once? Every 4 hours? Thank you for your help.

Hi Evie777 - I see the topic of Mast Cell Activation Syndrome (MCAS) has been raised and will share I too have Dermagraphia; due to my having hEDS a connective tissue disorder with an over abundance or disorganization of mast cells that are reactive to histamine (foods, DRUGS, preservatives, dyes etc.) and hyperadrengic POTS a typical trifecta and sensitive to the COVID vaccines. I may share what little I know, as well as what little I know is little understood about the vaccines and Long COVID. Starting w/the "allergic reaction" that was mentioned to you is different from typical allergies, a mast cell reaction like dermographism (I've had it since childhood) is different and I was concerned about getting the C-19 vaccine as the risk for triggering an event is hight with drugs. I was told I shouldn't get the flu shot as I can't tolerate the preservative in it and so I saw an immunologist to be cleared for the COVID vaccine and had to have it done onsite vs. in a clinic setting in case I had an adverse reaction aka anaphylaxis. I had an adverse reaction on day 2; awakening with nerves firing off in my body from my neck to the bottoms of my feet for 4-days and GI issues to name a few. I alerted my UNC Chapel Hill immunologist I didn't want to get the 2nd shot, for I fear of getting a neuropathy like Guillan-Barre syndrome or otherwise that was an adverse reaction reported to some of the vaccines. She agreed I shouldn't get the Moderna again, but given my reaction due to my Mast Cell Activation Syndrome (MCAS) a pre-existing condition I would need protection try Pfizer as the 2nd shot given it has 2x less mRNA than Moderna that I reacted too. I had sever but not adverse reactions to the Pfizer 2nd shot and booster. It may be you've experienced a temporary flare up related to your Pfizer COVID vaccination and your body's inflammation state that fades as does the vaccine potency and hope you won't learn you had an undiagnosed MCAS pre-existing condition. I had MCAS since childhood that I did have diagnosed until I was 51 and had developed breast cancer and a MCAS response to it with 6 months of diarrhea and vomiting after eating (as food is high histamine) and there is a link to histamine and cancer until the cancer was removed and all my symptoms ceased as though a light switch was turned off. I had this reaction not only to flu shot previously (along with other symptoms), tomato sauce and other high histamine foods, but also explained in hindsight two unexplained medical events that landed me in the ER. I suspect, your dermagraphia was a mast cell response to histamine and inflammation in your body due to the vaccine. We've many mast cells in our GI system and you may wish discussing taking antihistamines with your PCP until it calms down and furthering there is also a tasteless liquid called cromolyn (my PCP never prescribed this and I told him I learned all this from medical videos through the Ehlers Danlos Society) that you drink in a beverage 30 min. before eating, to coat the GI track to reduce a histamine response to foods. You may wish to look online at what foods are highest in histamine and reduce them in your diet for a while. I will share that the Allergy Partners a well respected group in NC acknowledged over a phone call this is different than what they may treat me for and referred me to a specialist/immunologist who treats mast cell activation syndrome. In case you learn you have Long COVID, which you haven't mentioned or other hallmarks but sharing in case it helps another...many health care groups (Ehlers Danlos, Mastocytosis/MCAS, Multiple Sclerosis, Chronic Fatigue etc.) have joined together to research and find cure for Long COVID under an NIH grant as they share many unexplained symptoms in kind. I trust and hope your dermagraphia will resolve and that these few tips may support improvement and if not give you a little something to discuss with your PCP for further investigation. Best wishes.

Thank you @hedstrong for taking the time to share your response. I'm definitely overreacting to the strange things happening in my body. Every morning I intentionally scratch to see if things have calmed down. The problem is not knowing if this is vaccine related, long Covid related, menopause related, autoimmune related or stress related. I just don't want to ruminate over this any more.

Thank you again. I appreciate your insight.

@mirzahasher, Hi sorry it took me a while to respond to you, but yes I am still having this issue. I'm currently taking cetirizine 10mg 2 tabs twice daily, taking famotidine twice daily, and also Singulair tabs. If I skip a dose I get very itchy and develop the hives right away.
Im going on 7 months with this issue and still currently have an elevated heart rate always in the 90s-100 rate. Hope that helps. Hope you are doing well.