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 also developed dermatographia 6 days following my last moderna covid booster (Nov, 2022). I assumed it was an allergy and did everything to eliminate potential causes. It was very bad for 6 weeks, after which is started getting better. Allegra for Hives (which is probably just plain Allegra), and Benadryl spray were life savers. I try not to take Allegra every day so that I can see if it's getting better. I've heard this reaction can last 6 months. Ugh.

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Dermatographism manifested itself last June after a bout of Covid (2nd time) and following on the heels of a stomach bug. Last summer I saw nearly every specialist one could possibly see because the dermatographism was followed by twitches and I was (finally) declared to be histamine intolerant and - surprise- found to be 100% in menopause. All of that said, Xolair was recommended. (After going the usual route of Zyrtec, Claritin, Allegra, and H2s.) First I was denied by my insurance, wrote a scathing response, and was then approved. The shots are delivered in rounds of 3. After round 1 I noticed a HUGE improvement. Had round 2 yesterday. The shots are administered monthly and I have no need of any other medication. Xolair is approved until November but I hope after the three rounds I don't need to continue.

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@evie777

Dermatographism manifested itself last June after a bout of Covid (2nd time) and following on the heels of a stomach bug. Last summer I saw nearly every specialist one could possibly see because the dermatographism was followed by twitches and I was (finally) declared to be histamine intolerant and - surprise- found to be 100% in menopause. All of that said, Xolair was recommended. (After going the usual route of Zyrtec, Claritin, Allegra, and H2s.) First I was denied by my insurance, wrote a scathing response, and was then approved. The shots are delivered in rounds of 3. After round 1 I noticed a HUGE improvement. Had round 2 yesterday. The shots are administered monthly and I have no need of any other medication. Xolair is approved until November but I hope after the three rounds I don't need to continue.

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I have been following threads that relate to the use of Xolair. There are two others who have used Xolair in the recent past, specifically @hellopeeps and @lo1. I am very curious and interested in knowing how you and they are doing after receiving it.

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@daisymiq

I have been following threads that relate to the use of Xolair. There are two others who have used Xolair in the recent past, specifically @hellopeeps and @lo1. I am very curious and interested in knowing how you and they are doing after receiving it.

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I have been following threads that relate to the use of Xolair. There are two others who have used Xolair in the recent past, specifically @hellopeeps and @lo1. I am very curious and interested in knowing how you and they are doing after receiving the complete treatment.

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@daisymiq

I have been following threads that relate to the use of Xolair. There are two others who have used Xolair in the recent past, specifically @hellopeeps and @lo1. I am very curious and interested in knowing how you and they are doing after receiving the complete treatment.

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Hi, xolair really worked for me. I have been on it for almost a year now and started doing monthly injections. I have not had a hives outbreak since December 2021. I am now spacing at 8 weeks and will hopefully be ending treatment soon. My dermatographia is significantly better as well.

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Hi all - I wanted to share my similar experience with dermatographia. I have always wondered if the covid vaccines had anything to do with my hives and it is quite eye opening to hear others' stories on this discussion board. The booster seems to be a theme here - I got my booster on March 14th, 2022 in preparation for a trip to Aruba and right around two weeks later the hives started appearing. The hives also came with another interesting twist - I developed a shrimp allergy at the same exact time. I have never been allergic to a single thing my entire life (I am now 30) and it seemed like such strange timing to have happened right when the hives started. I went to my primary care physician who of course prescribed ceterizine to help combat the hives. Bloodwork was taken and proved that the shrimp allergy was positive. I was referred to an allergist that ran a skin prick test for every allergy they had available. Aside from the shrimp, the only other allergy that returned was mold and dust which is probably pretty common. They also did a skin scrape test for dermatographia and came back to say it was the worst case they had ever seen. I'm sure you all can imagine how inflamed my arm got just from the blood pressure test alone. After all of that, I was basically told there was nothing else they could do and that I should stick to the allergy medication I was already taking. I brought up xolair from hearing others' experiences and the allergist was incredibly against it since the cetirizine was "working perfectly fine and was safe". Yes it helps with the hives but doesn't eliminate them completely. The allergist also let me know that they don't administer xolair because their office is small and it requires monitoring after you get it so that is most likely why it wasn't recommended. It hasn't been a full year yet since the booster but like others have mentioned, I am really hoping that the hives go away after the year or year and a half mark. I live a healthy lifestyle, work out regularly and eat pretty healthy. I know there is not full proof that the booster or covid vaccine caused this because others of course had chronic hives many years prior to 2020 and the existence of the virus. However, it is truly discouraging to even think that something you thought could be trusted being developed by scientists and was encouraged to help the greater good of the population could have such negative consequences. I truly do not want to get another vaccine again in my life after this experience and hope this issue comes to light more over time.

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@lo1

Hi, xolair really worked for me. I have been on it for almost a year now and started doing monthly injections. I have not had a hives outbreak since December 2021. I am now spacing at 8 weeks and will hopefully be ending treatment soon. My dermatographia is significantly better as well.

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Thank you @lol for your helpful feedback! I have previously considered taking Xolair per my dermatologist’s recommendation as a last resort. Because of XOLAIR’s possible serious side effects, I am holding off on it and trying to obtain first-hand information on the experiences of people who have completed their Xolair regimen. I am currently on my 10th month journey of Dermatographia. My severe rashes first appeared in April, 2022 twelve days after receiving my second Moderna booster shot. My doctor prescribed Allegra 180 mgs. twice a day (AM and PM), Montelukast once a day, and one Zyrtec before bedtime on an as needed basis. After six months, I was able to comfortably decrease the treatment from 1 Allegra daily to 1 Allegra every other day which lasted for two months; then 1 Allegra every other three days for one month. I feel I am now ready to space my Allegra intake of 1 tablet out every other four days (my 10th enduring month). The over-the-counter CUREL Anti-Itch lotion is my go-to remedy for sporadic brief itching. I am hoping that this dermatographia would soon clear itself out of my system and skip Xolair treatment altogether. I wonder where Moderna and Pfizer stand on this issue?

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@mginsburg1

Hi all - I wanted to share my similar experience with dermatographia. I have always wondered if the covid vaccines had anything to do with my hives and it is quite eye opening to hear others' stories on this discussion board. The booster seems to be a theme here - I got my booster on March 14th, 2022 in preparation for a trip to Aruba and right around two weeks later the hives started appearing. The hives also came with another interesting twist - I developed a shrimp allergy at the same exact time. I have never been allergic to a single thing my entire life (I am now 30) and it seemed like such strange timing to have happened right when the hives started. I went to my primary care physician who of course prescribed ceterizine to help combat the hives. Bloodwork was taken and proved that the shrimp allergy was positive. I was referred to an allergist that ran a skin prick test for every allergy they had available. Aside from the shrimp, the only other allergy that returned was mold and dust which is probably pretty common. They also did a skin scrape test for dermatographia and came back to say it was the worst case they had ever seen. I'm sure you all can imagine how inflamed my arm got just from the blood pressure test alone. After all of that, I was basically told there was nothing else they could do and that I should stick to the allergy medication I was already taking. I brought up xolair from hearing others' experiences and the allergist was incredibly against it since the cetirizine was "working perfectly fine and was safe". Yes it helps with the hives but doesn't eliminate them completely. The allergist also let me know that they don't administer xolair because their office is small and it requires monitoring after you get it so that is most likely why it wasn't recommended. It hasn't been a full year yet since the booster but like others have mentioned, I am really hoping that the hives go away after the year or year and a half mark. I live a healthy lifestyle, work out regularly and eat pretty healthy. I know there is not full proof that the booster or covid vaccine caused this because others of course had chronic hives many years prior to 2020 and the existence of the virus. However, it is truly discouraging to even think that something you thought could be trusted being developed by scientists and was encouraged to help the greater good of the population could have such negative consequences. I truly do not want to get another vaccine again in my life after this experience and hope this issue comes to light more over time.

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Your story sounds so similar to mine (I posted all the details a while back). It’s so scary, frustrating, anger inducing and downright torture. Everyone’s body is different but I am at about the year and 3 month mark and the hives are gone. I still need an Allegra maybe once every 3 days because I get itchy without it. It’s less skin writing now and more just general redness. I’m hoping one day it goes away completely but it’s such a drastic improvement from where I was a year ago I’ll take it. I’m also in my early 30s and I too don’t think I can ever get another vaccine. I’m terrified. Hang in there, it gets better.

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Hi, I don't have much to add other than a similar story and a sympathetic ear. I had an acute hives outbreak 10 days after my Moderna booster (3rd shot, Sep. 2022, Omicron variant), though at the time I didn't connect it to the shot. Never had allergies of any sort in my life before that. I thought I had somehow missed a swarm of mosquitoes biting me all at once. A few days later, I went to my doctor, was told to take antihistamines, but they did next to nothing, so she gave me a 10-day Prednisone run. Immediately took care of the hives, but I was surprised to find symptoms that I later identified (self-diagnosis) as dermatographia.

It's now almost exactly 6 months on (mid March 2023). I have been taking Zyrtec every day (first 10mg, then 5mg per day for the last two months or so). I've tried stopping the Zyrtec altogether, but after about 24-36 hours, I notice irritation and redness starting to creep up.

Annoying but so far manageable. Hoping it fades away on its own... For now I can still draw detailed pictures on my skin, so I know it's hanging around.

How many of you have found that it goes away completely?

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I developed dermatographia about a week after my first Pfizer Covid vaccine in 2021.

Taking zyrtec keeps it at bay. I have tried getting off zyrtec several times and each time after a couple of days it comes back.

I am going for allergy skin tests on 5-May-23 and was required to stop Zyrtec. It's been about 3 days and it's just starting to come back again.

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