I've just been diagnosed with dermagraphia (symptomatic)
which explains all my skin hypersensitivities: redness, burning, itching, swelling, "allergic" reactions, rashes...
Anybody else been diagnosed with this skin disease? :o
Treatment is with antihistamines but I can't take antihistamines without losing all the saliva I have and developing mouth sores.
How do you treat this condition systemically without antihistamines?
I have Dermagraphia.
My understanding is that Dermagraphia (skin writing) is a condition where rubbing, scrapping, or pressure will cause the skin to form welts or raised red marks.
I will get these marks from scratching, from, resting my arm on a table edge, from the seams of jeans pressing on my skin, from sheet folds against my skin, from running my fingernail across my skin, etc.
I don't think Dermagraphia is the cause of your skin hypersensitivities. I think your skin hypersensitivities and your dermagraphia are the result of some underlying cause that affects the mast cells and histamine. The Dermagraphia is just a manifestation of that underlying cause.
I don't treat it. I just try to avoid things and situations that give me Dermagraphia.
I do have a lot of allergies and my skin is very sensitive. Again, I don't take anything. I just try to avoid anything that will exacerbate the sensitivities.
I think the following link gives a pretty good synopsis. I know it is wikipedia, but I think it actually explains it better than the Mayo web site:
https://en.wikipedia.org/wiki/Dermatographic_urticaria
Thanks Jasper,
I'm certain you're correct about it just being just another manifestation of mast cells gone wild.
The skin doc who diagnosed me decided to blame all my dermatological woes on dermagraphia.
I think it's just proof of how hypersensitive my skin has become.
Do you know if this has anything to do with the SJS or if it's a completely unrelated skin disease?
I have had Dermagraphia most of my life. I don't know if it is related to Sjogren's or not. I do think it is related in some way, but maybe not specifically to Sjogren's. It may be more related to autoimmunity in general. Perhaps whatever is causing our autoimmunity is also causing our hypersensitivities. Maybe our ramped up immune system (from the autoimmunity) is causing us to be hypersensitive to things.
Does your face turn red when you cry and then stay red for hours? Mine does. Well, it did when I could still cry, LOL. I have not had tears for years so I don't have this problem anymore. But I used to have it. Interestingly enough, my mother had the same problem. If she cried, her face was red for hours. She did not have Sjogren's Disease, but she did have severe crippling Rheumatoid Arthritis. She also was very sensitive to everything and allergic to many things.
If I hammer, my arm will start to swell. If I use a shovel to dig, the arch of my foot will swell from the pressure of the shovel edge on the arch, even though I have shoes on. I break out from all sorts of things and/or start coughing and/or get dizzy and head achy from various scents and cleaners as well as many environmental things like pollen, grass, newspaper print, dust, mold, etc.
I don't see how the Derm doc can say all of your skin problems are due to Dermagraphia. Dermagraphia is just one manifestation of the underlying problem which is causing all of your dermatological problems. If he is saying your Dermagraphia is the cause of your hypersensitivities, then he either does not know much about it or he is just telling you something to placate you. But his explanation is incorrect. It is backwards. Sometimes I think doctors try to oversimplify things to shut us up or else they just don't understand the real problem.
I have it as a part of MCAS.
Quote from: Jasper on August 23, 2016, 03:36:48 PM
I don't see how the Derm doc can say all of your skin problems are due to Dermagraphia. Dermagraphia is just one manifestation of the underlying problem which is causing all of your dermatological problems. If he is saying your Dermagraphia is the cause of your hypersensitivities, then he either does not know much about it or he is just telling you something to placate you. But his explanation is incorrect. It is backwards. Sometimes I think doctors try to oversimplify things to shut us up or else they just don't understand the real problem.
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Exactly.
So we're back to MCAS...
When I described my symptoms to my former GP, she said "pressure urticaria".
I can't "write" on my skin, but I have what Jasper said, "marks from scratching, from the seams of jeans (or belts or bra or anything) pressing on my skin, from sheet folds against my skin". Especially from tight clothes I get huge welts that stay there, sometimes a couple of days even, and itch like crazy. But I don't know if I'd be diagnosed with dermatographism if I went to see a derm.
My skin is also very sensitive in general. Itchy, sometimes even painful to touch, weird rashes. Like this summer, I seem to have developed "permanent goose pumps" on the sides of my wrists/forearms.
edit: corrected the font size
Yes Jasper, I have everything you mentioned.
Looks like we're indeed back to MCAD. ::)
Sometimes I wonder if MCAD is causing all my SJS symptoms as well....?
I have this on occasion depending on what I wear, lean on or whatever. I don't treat it unless the itching gets too bad cause then I know that it will just keep on. I use another antihistamine that my immunologist gave me years ago. It is called Xyzal 5 mgm and it is a second cousin to benedryl but doesn't cause sleepiness. I don't notice much dryness either. It can be spendy so I would check with your insurance company or pharmacy to see what you will have to pay.
Sometimes people with buy the OTC benedryl in capsule form and then open the capsule and pour out aout 1/2 of the powder. This way you are getting about 12.5 mgm or half as much benedryl. This can still help with the symptoms but the side effects are less. Good luck. Irish
I experience this all the time, but didn't even know there was a name for it.
susanep
Very good suggestions irish!
I've actually been reading that Xyzal is the ONLY antihistamine that causes less dry mouth side effects!
I really want to try it but it's not available at all in my country.
I'll try to find a way to get it. Unfortunately it's prescription-only. ::)
see the section on cutaneous mastocytosis:
http:// patient.info/doctor/Mastocytosis-and-Mast-Cell-Disorders
The link doesn't work
@ Sharon, because the site in the link is a commercial one, offering product for sale, Jazzlover has posted only the information to the link, not a direct link. If you copy and paste the url to your browser, you can find the page.
Yes Linda, I know, but when I copy/paste it I can't get the site.
I get a notification that the "webpage cannot be displayed".
What I did was put a space between the // and the word "patient."
So copy and paste and then remove the space .. it worked just now.
I hate that we can't offer the link AS IS. It makes things difficult for members.
OK, got it now, thanks!
I agree, life is hard enough without being restricted to post a link "as is"!
Glad you got through!! :)
sharon i can buy xyzal here in italy if u want and send it to u
Wow, that would be amazing of you bluegardenia!
Don't you need a prescription to get it in Italy?
I may be getting an initial box from a friend going overseas (depending on if he manages to get it for me....).
If it actually helps me I'd be grateful for your help, though I'm not sure Customs here would allow me to import it.
i can try anyway, let me know, i dont need a prescription
Thanks blue, that's wonderful of you :-*
I would caution you both to check the legalities of this transaction, from both countries. In general, Sjogren's World can not support or condone the sale and transfer of any medication.
Sharon ..... Maybe Hydroxyzine Hydrochloride would work for you.
It works for me. In fact, it is the only thing that works for me for rashes, hypersensitive skin issues, etc. Benadryl, Zyrtec, Calaritin, etc. have never worked for me, but Hydroxyzine does work for me.
From drugs.com
"Useful in the management of pruritus due to allergic conditions such as chronic urticaria and atopic and contact dermatoses, and in histamine-mediated pruritus."
You will need a prescription for it.
I take 25mg if I need to take something. Lower doses did not work for me. A few years ago, when I was on some medication which caused itching and rash, I was taking 50 mg every 6 hours, but now that I am no longer on that medication, I take 25 mg as needed and that does works for my "normal" hypersensitivity. I don't take it every day ..... just when I need it, which may be once or twice every couple of weeks. However, a person could take it more often if needed.
It does not cause nearly as much dryness as Benadryl causes. In fact, I don't notice any dryness from it.
How interesting you mentioned this Jasper...I just requested Hydroxyzine from my doctor
after hearing from someone on a FB group that it helped her with eyelid swelling.
He prescribed 25mg a day (and seemed happy to oblige in sedating me :D...I think he's wanted to for years now!)
I'm so happy to hear it might not cause the terrible dryness antihistamines usually cause.
I'm just afraid I might not be able to function on it since it's also a strong sedative.
I need to continue working and need to be alert, but my symtoms mostly begin/worsen by the afternoon.
I suppose that if you take it only at night it wears off by the morning?
Hydroxyzine Hydrochloride has a half life of 20 hours, so half of it is excreted by 20 hours. So, it stays in the system for quite a long time.
It might work very well for you to take it at bedtime, or maybe 8 pm since it takes a little time to dissolve and start taking effect. If you did that, then the brunt of the drowsiness, if you get drowsiness from it, would be during the night. Yet, you would still have some of it in your system to counteract the hypersensitivities that occur later in the day.
Hydroxyzine does not cause dryness for me and it does not make me drowsy. If I lay down and go to sleep, I do sleep better, but it does not make me feel drowsy if I am up and about.
In addition, the body does get accustomed to any drowsiness it may cause, so that as time goes on, one does not get as drowsy as one would get on the first day of use.
Hope it works well for you.
Thanks so much Jasper, this has been very helpful!
I'll give it a trial over the weekend.