New Dermatographia: What is helping you?

Posted by jackographia @jackographia, Nov 28, 2021

If you don't know what dermatographia is, please feel free to read and participate, but this discussion is aimed at people who currently suffer from this illness. I have questions that I don't think anyone without the condition can answer. The onset of my symptoms began about a week after receiving the Moderna covid booster shot. (My 3rd covid shot) Which may or may not be a factor. My symptoms began with full body itching, where any scratching would lead to very easy skin reddening. I went into an urgent care soon after and was prescribed steroids (prednisone) and antihistamines. While these work to lessen the itch GREATLY, my skin still reacts to even slight scratches or pressure with easy redness. My condition is largely self-diagnosed, but my primary care physician agrees with it.

There is so little relative information about dealing with this illness that I feel like I need to reach out here to ask. If you have/had this condition:

1. Did you (like I am) develop a tightness in your esophagus? or any bowel issues?
2. Does your face get flushed, fully red and feel warm?
3. Do you know of any support groups that I can reach out to for information and solidarity?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Hello, @gnew92. I can offer you my two cents in reference to Xolair. Moderna boosted 10/25/21, trip to ER 11/04/21. Hives and dermatographia ever since. Began the journey on 4 doses of Allerga 180 mg per day. Currently down to one dose every other day of Zyrtec. I am schedule to receive my 4th dose of Xolair in three days. Reading the side effects definitely scared me. My quality of life was suffering. I reached out to my PCP, my PCP of 18 years, and she recommended I give Xolair a try. By dose 2, I noticed the itchiness decreased, about 15 days that month of my scalp not bothering me. Dose 3 increased the good days to 23 that month. I tried at this point to eliminate the Zyrtec. Nope. I had to take the Zyrtec daily until my system settled. Having the epi pen with me is something I have gotten used to. I plan to continue the Xolair through August (total of 7 doses). If a miracle happens and the hives and dermatographia disappear, I will definitely post the good news.

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@hellopeeps

Hello, @gnew92. I can offer you my two cents in reference to Xolair. Moderna boosted 10/25/21, trip to ER 11/04/21. Hives and dermatographia ever since. Began the journey on 4 doses of Allerga 180 mg per day. Currently down to one dose every other day of Zyrtec. I am schedule to receive my 4th dose of Xolair in three days. Reading the side effects definitely scared me. My quality of life was suffering. I reached out to my PCP, my PCP of 18 years, and she recommended I give Xolair a try. By dose 2, I noticed the itchiness decreased, about 15 days that month of my scalp not bothering me. Dose 3 increased the good days to 23 that month. I tried at this point to eliminate the Zyrtec. Nope. I had to take the Zyrtec daily until my system settled. Having the epi pen with me is something I have gotten used to. I plan to continue the Xolair through August (total of 7 doses). If a miracle happens and the hives and dermatographia disappear, I will definitely post the good news.

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@hellopeeps I’m so glad that Xolair worked for you and that you felt courageous enough to try despite the possible side effects. This is a great example for others!
Did you get any side effects?

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@hellopeeps

Hello, @gnew92. I can offer you my two cents in reference to Xolair. Moderna boosted 10/25/21, trip to ER 11/04/21. Hives and dermatographia ever since. Began the journey on 4 doses of Allerga 180 mg per day. Currently down to one dose every other day of Zyrtec. I am schedule to receive my 4th dose of Xolair in three days. Reading the side effects definitely scared me. My quality of life was suffering. I reached out to my PCP, my PCP of 18 years, and she recommended I give Xolair a try. By dose 2, I noticed the itchiness decreased, about 15 days that month of my scalp not bothering me. Dose 3 increased the good days to 23 that month. I tried at this point to eliminate the Zyrtec. Nope. I had to take the Zyrtec daily until my system settled. Having the epi pen with me is something I have gotten used to. I plan to continue the Xolair through August (total of 7 doses). If a miracle happens and the hives and dermatographia disappear, I will definitely post the good news.

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@hellopeeps Thank you so much for sharing your experience with Xolair. I’m so sorry you went through something so scary. I’m glad it’s been at least helping you and I hope with all my heart it eventually takes it away for good!

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@vmorelos29

I have the same exact symptoms after getting my covid Moderna booster. Exactly about 1 week after I noticed small amount of hives on my face and some tightness to my throat/wheezing and some residual cough and Shortness of breath. I do have a history of covid back in September and feel that its more related to having covid, but as I also got the vaccine booster not sure if it could be the vaccine vs covid.. Overall Im doing well, but the dermatographia is frustrating. I have tried a course of prednisone, on zyrtec, and also a betablocker due to tachycardia, use albuterol for the sob. My labs have indicated that my CRP is elevated and have been going up since. Maybe could be a case of serum sickness overall.

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Hey I also got Dermatographia after my moderna booster is it still going on for you?

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@mirzahasher

Hey I also got Dermatographia after my moderna booster is it still going on for you?

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Hey there, I know your comment was to another user but thought I would help to answer. I’ve had mine since mid December and I still have it. It’s gotten a lot better…I’ve gone from 3 antihistamines a day to 1. If I’m lucky I skip a day but I will get extremely itchy at night. When I scratch I get the thick red lines and small hives. So I’m just about at the 6 month mark.

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Hello, I have been dealing with all of the same..I have no answers, very frustrating! Moderna booster 12/15/21, GI symptoms began soon after..esophageal tightness/slow gastric emptying/horrible bloating & uncontrollable flatulence. Sorry, so awful! In January the hives began and have remained. Dermatographia.. started very itchy back/arms/legs/hands/feet..
face & ears would get red and hot, usually in evenings. My labs showed nothing. I’ve messed around with my diet and fasting, the only thing that helped was water fasting but the hives returned as soon as I began eating again, even with a histamine elimination diet. Researched and listened to some Dr Berg info..started taking some of his supplements and others..nothing has made it go away. I usually take a Claritin in AM & Benadryl at bedtime..typically keeps the hives at bay. I don’t feel particularly stressed or anxious. I have always been very healthy with zero allergies. I’m baffled. Any help or answers would be amazing!

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Really glad I found this post, good to have others who know what I've ben dealing with.... and really depressing to know how seemingly common this has been!!

Same symptoms. ~1 week after my 3rd Moderna shot February 2022, I broke out in full hives and severe allergic reaction. Went to urgent care and received several steroid shots/pills. The severe reaction went down, though I've been dealing with moderate to severe dermatographia and chest tightness since then. I have been taking Zyrtec and Benadryl on and off, which seems to help a bit but not 100%. I'm currently on day 5 of no antihistamines and have been feeling absolutely miserable. Skin marking and chest tightness is about the same, but the itchiness is unbearable. It is extremely sensitive, and the itching is deep and painful. I have zero history of allergies, and was hoping this would go away on its own. 4 months later and those hopes are disappearing.... Really praying for a treatment for this. Stay strong, my Etch a Sketch-skinned comrades.

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Hi again everyone,

So I’m hesitant to even post this as I’m afraid to jinx anything…but I’d like to offer those still suffering perhaps a small glimmer of hope. I’m definitely not 100% better but for the last couple of weeks I’ve been able to go 1 and maybe even 2 days with no antihistamine and sleep through the night without my cortisone cream. A month ago I would need to take an Allegra first thing in the morning and if I didn’t I would be suffering. If I was able to make it to evening I would be absolutely covered in hives and stripes. But I’m currently on day 2 of nothing and I feel just fine! I assume I will need to take another tomorrow. But this would have been unheard of a month or two ago. I am noticing my red lines are also milder and the hives are smaller. I’m currently on month 6. Maybe this is when things start to improve? I will keep you all posted. Also, I found this article, which was published back in March but I must have missed it. It seems like the magic number is day 10 for this to all erupt. I hope everyone is hanging in there.

https://onlinelibrary.wiley.com/doi/full/10.1002/emp2.12709
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@ballaluminumcup

Really glad I found this post, good to have others who know what I've ben dealing with.... and really depressing to know how seemingly common this has been!!

Same symptoms. ~1 week after my 3rd Moderna shot February 2022, I broke out in full hives and severe allergic reaction. Went to urgent care and received several steroid shots/pills. The severe reaction went down, though I've been dealing with moderate to severe dermatographia and chest tightness since then. I have been taking Zyrtec and Benadryl on and off, which seems to help a bit but not 100%. I'm currently on day 5 of no antihistamines and have been feeling absolutely miserable. Skin marking and chest tightness is about the same, but the itchiness is unbearable. It is extremely sensitive, and the itching is deep and painful. I have zero history of allergies, and was hoping this would go away on its own. 4 months later and those hopes are disappearing.... Really praying for a treatment for this. Stay strong, my Etch a Sketch-skinned comrades.

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@ballaluminumcup I’m so sorry that you’re experiencing this awful itchy rash. So are many people. I hope you’ve read through all the discussions about dermatographia. Have you worked with your doctor about the best antihistamine to take?does he have any suggestions for you?
I’m curious, though, why have you gone off the antihistamines for 5 days and are now miserable?

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Sounds very much like mast cell activation syndrome. It is often difficult to find a provider who treats this but could suggest Anne Maitland, MD, Tania Dempsey, MD, Laurence Afrin MD.

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