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.

I wanted to update the board on my allergist visit. The doctor diagnosed me with Histamine Intolerance (HIT) and said that this could very well be related to nearing menopause, so my rash/reactions may potentially go on a few more years. She did not discuss a low histamine diet, instead told me to go on Allegra. Start with 2 (morning and night) because I was aghast at the idea of taking 4 a day. I also started having muscle twitches all through my body and was convinced something nefarious was occurring beneath the skin. I flat out asked her if my allergies were causing me nerve damage. She laughed and said that high histamine causes muscle twitches. I will still see the rheumatologist in October because of the positive ANA, but the identified antibody has a really low correlation to rheumatoid autoimmune disease. I've attached a link of the photo I included.

https://www.histaminintoleranz.ch/en/symptoms.html#nerven
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@hellopeeps I am curious as to whether Xolair cleared your hives, itching and dermatographia. My dermatologist suggested Xolair if nothing else works for me, but I am concerned about the side effects of the injection. How many injections did you receive?

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Hi @gnew92 After month 6, are you now completely free of hives and dermatographia? Are you having flare-ups once in a while or are they finally gone?

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That's the best article I found as well. After two Modernas I have the same symptoms of dermatographia and esophagus tightening. I take an antihistamine every two days and it helps alot. But it's come back every two days since mid January 2022. I really hope it subsides over time and isn't permanent

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@daisymiq

@hellopeeps I am curious as to whether Xolair cleared your hives, itching and dermatographia. My dermatologist suggested Xolair if nothing else works for me, but I am concerned about the side effects of the injection. How many injections did you receive?

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Hello, @daisymiq. I am quickly approaching my 1 year "anniversary" (11-4-21) of dermatographia, itching and hives. I began Xolair February 2022. I have my doses scheduled monthly. Reading the side effects of Xolair concerned me. However, after speaking with my PCP of 20+ years I took her advice and began the injections through an allergist. For the first dose, I was required to stay in the office for an hour post injection. I was fine. I was sent home with a script for an Epipen. I have not needed to use it. The wait time post injection decreases monthly. I now leave the office after scheduling my next dose. Does it work? Yes, for about 15-18 days. I can tell when I need my next dose and it takes a few days to get back up to the level of comfort. I no longer have hives, however the dermatographia remains. If I scratch my skin, the redness and slight swelling lasts for 30 minutes. My scalp, feet and ears remain very sensitive. One side effect of the Xolair I have experienced a few times is a stiff neck. It is not every time, but it has happened. I hoped to be done with Xolair after 6 months...I am not ready to stop yet. I also take a 1/2 pill of Zyrtec daily. For everyone else still suffering, hang in there. I remain hopeful one day I will wake up to zero skin issues.

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@daisymiq

Hi @gnew92 After month 6, are you now completely free of hives and dermatographia? Are you having flare-ups once in a while or are they finally gone?

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Hey there, so sorry for the delayed response, just seeing this now. So thankfully I’ve still been improving. I take one Allegra maybe once or twice a week now (vs 3x per day when it first started). If a flare up happens it’s mostly in the middle of the night. Occasionally I’ll get a random hive here or there. The esophagus tightening happens around the time when I’m due for an Allegra. But that’s gotten better too. So I’m not 100% back to normal but significantly better than even a couple of months ago. Hoping this happens for everyone here and it continues!

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@hellopeeps

Hello, @daisymiq. I am quickly approaching my 1 year "anniversary" (11-4-21) of dermatographia, itching and hives. I began Xolair February 2022. I have my doses scheduled monthly. Reading the side effects of Xolair concerned me. However, after speaking with my PCP of 20+ years I took her advice and began the injections through an allergist. For the first dose, I was required to stay in the office for an hour post injection. I was fine. I was sent home with a script for an Epipen. I have not needed to use it. The wait time post injection decreases monthly. I now leave the office after scheduling my next dose. Does it work? Yes, for about 15-18 days. I can tell when I need my next dose and it takes a few days to get back up to the level of comfort. I no longer have hives, however the dermatographia remains. If I scratch my skin, the redness and slight swelling lasts for 30 minutes. My scalp, feet and ears remain very sensitive. One side effect of the Xolair I have experienced a few times is a stiff neck. It is not every time, but it has happened. I hoped to be done with Xolair after 6 months...I am not ready to stop yet. I also take a 1/2 pill of Zyrtec daily. For everyone else still suffering, hang in there. I remain hopeful one day I will wake up to zero skin issues.

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Thank you so much @hellopeeps for the detailed narrative you have shared with us. Your experience with Xolair helps me to understand what to expect if ever I decide to take Xolair in the future. I am in my 4th month of Dermatographia; if I still suffer from it, I might consider getting Xolair as suggested by my dermatologist. I appreciate your feedback very much.

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@gnew92

Hey there, so sorry for the delayed response, just seeing this now. So thankfully I’ve still been improving. I take one Allegra maybe once or twice a week now (vs 3x per day when it first started). If a flare up happens it’s mostly in the middle of the night. Occasionally I’ll get a random hive here or there. The esophagus tightening happens around the time when I’m due for an Allegra. But that’s gotten better too. So I’m not 100% back to normal but significantly better than even a couple of months ago. Hoping this happens for everyone here and it continues!

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Hello, @gnew92. You have given such inspiring input and hope to those of us who are still suffering from Dermatographia, which I consider a mysterious side effect of the COVID booster shot. I can only hope that this annoying condition would clear up completely soon. Please keep us posted on this journey especially when you become free from it a 100%. Thank you so much.

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@daisymiq

Hello, @gnew92. You have given such inspiring input and hope to those of us who are still suffering from Dermatographia, which I consider a mysterious side effect of the COVID booster shot. I can only hope that this annoying condition would clear up completely soon. Please keep us posted on this journey especially when you become free from it a 100%. Thank you so much.

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So happy to be of help! I will absolutely keep everyone updated. Hoping for positive news from everyone on here in hopefully the near future.

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I wanted to offer some hope.

I have been following this thread since 01/2022 after I developed severe itching/hives/dermatographism following my Moderna booster in 12/2021.

I went from taking Claritin every day for a couple months, to every other day, to every three-four days, to once a week, to as needed and now it’s been three-four weeks without the need to have Claritin. When I begin to experience that occasional random itching for a few days I’ll take a Claritin.

But it is subsiding after nearly nine months. When I saw a dermatologist, they said due to receiving so many vaccines in a short period of time (relative to your whole life) that our body reacts to that with an over-histamine reaction.

I was once where some of you were with throat tightening, severe itching/scratching, dermatographism and hives and thought I would have this forever as no one knew what was really going on.

I do wonder if as the vaccine’s effects wear off if my symptoms have been lessening. But it’s hard to say.

Just wanted to share this! I kept up with this thread daily to find remedies/relief/community. And hadn’t checked since finding some relief.

I hope you all find relief and answers!

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