I didn't really have a question...I just saw that there was a new Mastocytosis forum! I just wanted to say hey! I have Urticaria Pigmentosa. It seems to be the kind that stays with you into adulthood. I have a twin brother and he also has it but his has greatly decreased to where it's not even noticeable anymore. Lucky him! I just wondered if there are any others out there with Urticaria that still have it into their adulthood? Thanks!
Thanks for sharing. I really feel like it's hard to find info and personal stories about U.P.
I'm 25 years old, was diagnosed with U.P. at 3 months, have it on my entire body, and it has never changed or faded over time (with the exception of blending in a bit more when I'm tan). For a while in high school, I became pretty upset when my rash didn't change AT ALL because everything we were told and everything I read said it "usually" or 'probably' fades in one's teenage years. I feel that all those websites should ammend that and say, "there is a chance of U.P. fading..." Even though my parents taught me to love myself and love my skin no matter what, it was still pretty difficult letting go of that hope that it's just going to 'go away' one day.
It's interesting to hear that you and your brother have U.P. and that it's different for the both of you! Are you identical or fraternal twins? I'm from a family of 8 and I was the only one that was born with it. :)
I was curious, do you or your brother have children? Do any of them have U.P.?
Well hey! Yay someone finally answered back! I know! They should put in there more about the chance it won't go away. My brother still has the UP it's just a lot less noticeable! Mine it feels like just stands out and once in awhile people will be like oh my you've broken out into a rash! They'll do that all of a sudden when I've seen them for like months...like one day they just realize I have spots on me! I think I try to cover up as much as I can though to hide it. I never wear my hair up or anything since it is really bad on my neck. Kinda ***** because I would like to try some shorter hairstyles but I just can't let it go. I still get embarrassed if someone asks me about it but I tell them so they'll know.
Anyways, as for your questions...well we are faternal a boy/girl pair of twins are always fraternal...you can never make them look exactly alike with the different body parts and all lol :) Um actually my brother and his wife just had a baby so I don't know if she will have it or not. I know we were diagnosed at 2 years old so it'll probably be a wait and see sort of thing. I don't have any kids so I can't tell ya. I think my UP has faded a little, I think maybe by the time I'm 90 maybe it'll be gone...who knows.
It's good that you can tan and they blend in more. Lol I'm pale pale white so they stand out more and I don't really tan. I just burn so I don't go into the sun much.
I know what you mean about being upset in high school when ya realized it didn't change. Always always in the back of my mind I was like yay I can't wait until I'm older for this stuff to go away....my gosh I even had the photographer take my spots out of my senior picture because I was sure they would just be a memory soon...once I got to college I was like...wait it was supposed to go away and it didn't! I was like **** it's just like me to get a rare disease (or whatever it's labeled) and then have the even rarer form of it that doesn't go away! Oh well. I try to accept it...I can when I don't look in the mirror! I forget about it but once I look in the mirror it's like ahh man. Oh well.
Well I gotta get going I have ice skating soon! Take care and keep in touch! Thanks for replying to my post!
Thank you so much for your comments. I, too, was diagnosed with UP as a baby and am now 25 and my spots haven't faded either :( Sometimes I get so sad because I can't wear my hair up, wear low necklines, etc. I hate when people ask "what's on your neck??" Luckily, my UP is confined to my neck, forehead, and torso, so I can cover it up pretty easily. I just wish there were a cure for this....Sometimes I get so down!
Hi Cate! Yeah I know what you mean! I also always wear my hair down. I wear it in a ponytail sometimes but that's only around the house around with people who know me. I wish I could just do whatever I want with my hair. And sure I could do that but my neck is full of the spots, especially the back. I always get nervous when I go to a new hair stylists, but they never say anything. Yeah I also cover up with shirts and stuff. I tend to forget about my spots when I'm not looking in the mirror but then there's always someone who has to point out that I have a "rash". Always makes me embarrassed but oh well. I'm trying to get better with it and not let it embarrass me. It's not like I can help the way I look. I also just have UP on my neck, trunk and forehead! Yeah I wish there was a cure or that it would just finally fade away but oh well. Keep in touch Cate and I hope you have a lovely day!
It's really nice knowing that there are others out there with this condition! I know many people in this world have much worse diseases, so I try to keep a positive attitude. My pediatrician used to tell me the spots would fade away, but they haven't!! I am still holding out hope. They get worse when my skin is irritated or when I exercise. Also, my face often gets extremely red if I bump my head or the hairdresser pulls my hair too hard! It seems like there should be some pill we can take to make it go away. Are you from the East Coast? Good talking to you, Jennifer!
Hey again Cate! Well I'm not on the East Coast but close, I live in Ohio. I am originally from California though and I lived some in Alabama also. But I'm in Ohio now. :) Yeah I get a headache from getting my hair cut if the hairdresser is rough on my head. I'm sure it irritates the UP up there. I have to be careful with my arms too. They don't have spots on them but if I scratch or something rubs against them then it will get red and have little white bumps that pop up. I'm guessing it must be from the UP and maybe the spots don't show on my arms or something. But yeah it's good to keep a positive attitude. I wonder though, do you ever have someone in your life you've seen a bunch of times and then there's just one day that they all of a sudden finally "see" your spots? It's incredible to me. They are just plain as day but a couple of times I've met with people over and over and then maybe after seeing them over and over again within some months they all of a sudden say, "oh Jennifer! You got a rash! Are you okay?" And I'm like, ummm I've had this the entire time you've known me! It's like they have never noticed. It's so weird, but man I do all of a sudden feel my face get red from embarrassment and then I give them the quick speach about the disease. Most people are nice about it. I wish there was a pill that could make it all go away. Maybe then I'd be even more motivated to lose weight. I'm not huge or anything but part of me is like, what does it matter. Even if I got thinner I still wouldn't look great in a bathing suit. I think I'm getting over that way of thinking, or at least trying to! :) Well I must get back to work. Take care and it's good to hear back from ya Cate! Hope your day is lovely!
Just wanted to let you know that my husband also gets outbreaks of urticaria. He is 57 and they just started a couple of years ago. We have pretty much figured out what causes these outbreaks. Sulfites and Sodium Benzoate are two of the main triggers. Alot of shellfish are sprayed with sulfites. Also dried fruits contain sulfites. Try to avoid eating at salad bars because they spray the vegetables with sulfites to keep them fresher longer. My husband recently had an outbreak because he ate too much soy sauce. Soy Sauce contains Sodium Benzoate. We have discovered we now have to read every label to make sure he isn't getting too much of these chemicals in his system. Hope this helps you.
Hi, Jennifer and Jana!
Thanks for your help. That is interesting about the sulfites. I have often been tempted to try acupuncture, even though I am almost positive it wouldn't work. It's 2009; I feel like there has to be something that can be done! I wonder what would happen if a celebrity had this condition....surely they would make sure that a cure or some kind of treatment was found!
Figured I'd add my 2 cents. I was diagnosed with UP as an infant and still have it. Anything that I have read, did state that the majority of people with UP would find it disappearing by adulthood but I had always been aware there was a small chance it wouldn't go away. My spots have not lessened, in fact I'm pretty sure I've picked up a few more over there years as well as having my symptoms worsen (they are not really bad... just more annoying).
I do have to admit that I have gotten used to the spots and rashing. No one has asked me about my spots since elementary as the spots look like regular spots adults have... which makes it fun explaining to people "no really, mine are different than yours" lol. And no one comments on the rashes either I think they just ignore it, only my family mentions it out of concern.
I am so happy I found this forum. I am 25 and was just diagnosed with Urticaria pigmentosa. I've had it for at least 7 or 8 years now, but had no idea what it was. I thought it was just darker melanin spots or something. Luckily, I don't have really huge outbreaks or anything. Sometimes after showering I get couple of hives on my legs. I have spots on my legs, belly and breasts. I can see them spreading and I hope they don't spread onto my face. The doctor told me they almost never spread to the face. Is that true?
She also told me that, since I was still considered a child when I was 18 (!), it might go away by itself. But to me it seems it is spreading every day, and I doubt it'll ever go away. I still need to learn how to live with it and and how to love my body the way it is, or even better the way it will become.
I read somewhere that the hives and the urticaria pigmentosa get worse when a person is under an emotional stress. Have any of you noticed that?
Do you use any treatment, like antihistamines?
I am so glad I found this forum. This is making me feel so much less lonely.
I am kinda surprised at your doctor considering you a 'child' still. Most research I have seen was either childhood (first 5 years or so) and adulthood... the age you are at. Everyone's symptoms and severity differs but it can be managed. I have a few spots on my face, they are faint and are just there.
I have had this soooo long that honestly, I don't imagine not having it. Not that it defines who I am but after so many years (I am 28 this year and was diagnosed as an infant) it is just is.
Unfortunatly, with everyone having slightly different symptoms, etc. I can tell you what happens to me and what works for me but cannot guarantee it will be the same for you.
I have the following symptoms:
- rashing (this happens daily and usually face and chest)
- the spots itch (like mosquito bites, its better if you ignore the itch.. makes it worse when you scratch, this is also regular)
- hives (uncommon, maybe once a month if that)
- chest pain, trouble breathing (very uncommon)
- and I am sure I have other symptoms that are hard to tell if its other things or the disease.
I myself do not take regular antihistamines as I do not find the itching and rashing to be an issue. I do carry benadryl as my emergency backup and it has come in handy a few times. I do also keep an antihistamine in the house (Reactine, Aerius, etc.) just in case I know I will be exposed to something that will make me feel bad... preventative maitenance.
I'm lucky, I rarely have serious reactions. Scents such as perfumes, smudging, paint, any other sort of fumes are unfortunately a trigger for me. Generally causes me to rash (flush) and get itchy. Smudging though (burning sweetgrass) is my one serious reaction, trouble breathing, chest pains, hives, etc. Seafood makes me rash... I still eat it in small portions (mmmm scallops and shrimp). And then there are random triggers, yes emotions make me rash... nervous, stress, etc. Sometimes I rash for no particular reason, maybe there was dust in the air, etc.
I recommend accepting the rashing and the spots (mind you I have no idea what your spots are like.. mine are just light brown and look like other people's beauty marks).
Some headaches... everytimes I see a new doctor, dentist, etc. I have to explain to them what I have... just cause it is that uncommon. I have even brough research material to my doctor for him to look at. I find most are interested in learning, any that I feel aren't taking me seriously (they don't have to panic but ... you shouldn't feel they are just nodding their head going 'uh huh, uh huh') I don't see again. I also, don't let anyone inject me with anything unless I know what it is, just in case.
And now that I have completely rambled on I will stop. I recommend looking into the Mastocytosis Society, they can provide you with more info as well and they double as a support group.
Hello All, my name is Tif. I have a one year old little girl that at 5 months old, presented with some peculiar looking round to oval shaped pinkish brown spots on her torso and back with a welt or two on her legs and arms and neck- usually behind her ears that sometimes look like mosquito bites. These spots never fully go away, they become red and inflamed at times and begin to itch and then fade back to a light brownish color. I took her to the pediatrician and he said he was not sure what it was, but it looked like some form of urticaria, but the larger flat round slightly raised pinkish brown spots threw him off- he said we will take a wait and see approach and instructed me to give her anti histamines like claritin for kids. I guess I'm grasping at straws here but I was wondering, does the description of symptoms I just listed above sound like anything you've dealt with? I have done hours of research on this and it seems like her symptoms match that of Urticaria Pigmentosa. I am very worried because I've seen some other conditions that sort of match up- not as much as U.P. but they could be serious and detrimental to her well being. If anyone could give some advice on this I would deeply appreciate it. Thanks in advance.
Hi Tif! Well to me it does sound like your little girl has Urticaria Pigmentosa but I'm not a doctor so I don't want to say for sure. I have spots that are a pinkish brown and after they are rubbed then they become red and inflamed and it goes away after about five minutes of being left alone. The doctor is right about using antihistamines if they are bothering her. I would recommend that you get an appointment with a dermatologist. A dermatologist would know more about UP than a pediatrician and would be better at making a definite diagnosis. I hope this helps!
Hi Jennifer thank you so so much for replying to my query. I will most definitely get her checked out again. I was not sure as to whether I should have her seen by my oldest son's immunologist/allergist or a dermatologist. I will take your advice and have her seen by the dermatologist. Thanks again!
Hey again Tif...actually either one of those doctors would be fine. I have an immunologist/allergist doctor I see...I actually saw him about a suspected allergy problem but was surprised he knew about urticaria pigmentosa. He's great and I let his interns come in and see me so they can learn more about the condition. It was just back in the day all my mom knew to do was go to a dermatologist and that is how I was diagnosed. So go with whichever doctor you feel more comfortable with!
Thank you so much again- my poor baby girl. I will take her to the dermatologist first. We may end up at the allergist later. I've noticed a few more lesions on her and they appear to be more of the same, U.P. They flare up and she scratches and then within minutes or a couple hours they go back down to a pinkish or faint brown. I just want to make sure we are not dealing with something systemic as I've read that can be a lot worse for her. She eats well and to all intents and purposes is a normal healthy baby so I will try to keep a level head- just wish I could take it all for my kids. Finding this forum and speaking with you has definitely reduced my anxiety about the situation and I can't thank you enough for sharing your story. You know as a parent you fear the worst and hope for the best. ***HUGS*** Thank you and I will promptly update everyone with her diagnosis and story as soon as I find out.
Hey again Tif! Sorry, I haven't been back on this forum in awhile! Did you see the dermatologist yet and get a diagnosis? As far as systemic they can do a blood test to find that out I do believe. Let me know how it goes and I'll keep you all in my prayers!
hello i also have these reddesh brown patches on my neck and chest . the one on my chest i have had for sometime now and its spreading , but the one my my neck i just got a few wks ago and its getting darker and spreading a lil more up my neck they look like a birthmark of some sort. could this possibley be U.P. ? I am getting headaches , and sometimes i get gastro problems like alot of gas, belly aches and diarrahe and heartburn . they dont really itch at least i dont notice it . but the back of my neck does im constanly scratching back there. Anyways if anyone can pls tell me if this might sound like U.P. thank you
Hi Jennifer thanks for asking! I also appreciate the insight and info you have provided. I have a pediatrician who likes a wait and see approach regardless of my concerns ( though he acknowledges she has some sort of possible skin issue that is not a run of the mill condition that acts as though it is urticaria of some sort- he's "not sure what those spots are though because those don't look like hives" he says) so we are currently in the process of getting her seen by someone else. I am pretty much convinced after our communication, this forum and the extensive research and information I have gathered that she does have U.P. I will not be the least bit surprised when I finally get her tested if it comes back that she has it. She is also presenting with more of those peculiar brownish pink spots that appear to stay put once they show up, just flare up and then go back to a lighter flesh tone color. I will ask the doctor about both the cutaneous and systemic forms of the condition and I will insist on testing and update you with our results. I worry just because I have since read some things about what U.P. can predispose you to but you have given me much hope and relief. Thank you so much again and I'll be back within the next month with an update :-)
Hello! Welcome to our forum! Anyways, so have you just recently presented with these problems? Urticaria Pigmentosa starts by the age of 2. Maybe its another form of masocytosis....I'm not sure. If I were you I would make an appointment with a dermatologist and see if they can help you figure out what you have. I think that would be the best route to go and help you get the answers you are looking for! I hope this helps! S
Hey Tif! Great to hear back from ya! Yes please do keep us updated! Yeah I know Urticaria can go into all sorts of things but I will keep you all in my prayers! I hope that you get the answers you are looking for and that the prognosis is good! I know cutaneous is the best to have out of the two. Systemic can cause a lot more problems. And I think the doctor is wise to want to do a sit back and wait approach. It's very frustrating sometimes when they want to tell you a diagnosis and then a year later you find out he jumped the gun and was wrong. But yeah....definitely I'd use a dermatologist or immunologist who have more training in these matters. Good luck and hope to hear from you soon!
Thank you jenn ,i went to my gp he thinks its ring worm lol but i dont think so ive had them as a kid before and they never looked like this , i am posting pics and had circle the areas where the marks are !
Hi Jennifer! I know this is years later, but I wondered if you still kept up with blog. Well in case you did. I too have UP, and I hate it. I developed this in my early 20's and it got worse as I got older. I am now in my mid 30's, and just got control of it working with my hemotologist and dermatologist. I have it all over my body...really bad on my arms, legs, face, and neck. It's very embarrassing. Sometimes people look at me weird, and I get really down. I too live in Ohio. It's nice to read other stories and know that I'm not alone. I'm still praying for a cure. I don't think anyone should have to live with this forever.
I'll try and make a long story short. I went to the dematologist about a year ago because I started getting these red spots on my legs and on my arms. They first started appearing about two years prior and were increasing and getting worse. They would get red when slightly rubbed, after the shower, or when any other type of slight rubbing. People started noticing them. The doctor did a biopsy and diagnosed Uticaria Pigmentosa. I researched online and was shocked to find that no one know anything about this!! Luckily the dermatologist had seen one other case, so she was familair with UP and she asked me a series of questions about any sort of health issues I had been experiencing prior. The only issue I had was digestive. I always dismissed my digestion issues as "the way my body worked"... I would often have diarrhea. Or, I would go from not having to "go" - to needing a bathroom immediately. That had been going on for about three years - about the same time these spots started showing up, but I never put two and two together. The doctor said that digestive issues can often be associated with UP. The only thing she said she could prescribe was antihistimines. Other than that, she offered me no solutions except to run some really expensive tests. I started taking Zyrtec for a few months. Anyways. My mom and I both read these blogs and did research online. She found one interesting article about a lady who tried everything and finally tried cutting Gluten (wheat) out of her diet. She said she had great results, and that after a few years, her spots actually faded and went away!! The whole time it was just an internal allergy. This seemed to click in my head because I remember the dermatologist first telling me that my "spots" looked like an internal allergy that was presenting itself in my skin. I decided to try the no Gluten thing. And it worked!! I still have my spots, but they don't get red, and I'm not breaking out in any new ones!! That was huge, because before that, I was getting new ones every day. I've been on the no Gluten diet for about 6 months and still with great results. It has also cleared up any and all digestive issues!! Its definitely worth trying for anyone who is having an issue. I will say, you have to be serious about really cutting it out of your diet, because Gluten is hidden in everything. But apparently it may be a gluten allergy for some. I hope this gives you hope!
Completely cutting gluten out of my diet worked for me. I read an article written by a lady with UP who first did this, so I decided to try it. And I had great results!! I no longer break out in spots as long as I keep a gluten free diet. It also cleared up digestive issues I was having. The spots I do have don't get red anymore. The lady who wrote the article I read said in time hers actually faded. Might be worth trying ;)
Hello, this forum is a little old but i just wanted to say i was recently diagnosed with ut. It's terrible because i am 17 and these hives just started 2 weeks ago, wont fade as and worst of all it's on my face! And it's intensly itchy and gets in the way of my studies. How did you guys manage? I don't want to keep on taking the steroid pills because it's going to damage my immune system
Hey!! I was just diagnosed with UP last week, but i have been dealing with it for 4 months now.. some how the doctors got it mixed up with Scabies..and basically ruined my skin with treatments for that! I dont even know how they made that mistake.. but after seeing a dermatologist i was properly diagnosed!! But yeah.. im 16 and have just seen actual signs of UP like on the internet in my arm tonight! Pretty shocking and worrying :(
Hi all! I know these posts are old but hopefully you still check in. I am an RN and mother of a now 8 year old boy that was diagnosed with UP at age 2. Just a little history to see if any of his story jives with yours. He had meningitis at 3 weeks old- treated with vancomycin and acyclovir in the hospital (I've always wondered if this could have contributed). He was a miserable baby- reflux, sensory issues, crying all the time, maybe a milk allergy. He was nursed until almost 2 years and I had to avoid dairy. He had all his shots on schedule. I really thought maybe autism. My husband and I would fret and came to the conclusion that we would have to "love it out of him". After surgery to get his tonsils/adenoids removed and tubes put in his ears I gave him the prescribed Tylenol with codeine. Then I noticed his first spot on his abdomen in his diaper area. I noticed the more I tried to get rid of that "odd diaper rash" the worse it looked. Then spots showed up on his neck and I had him biopsied. Of course I would have a kid with an "orphan disease"- lol! Your advise is excellent and see if you had anymore to give me. I have taken him to the only pedi-derm dr around. His is pretty severe- head, forehead, neck, back, torso, buttocks, arms, genital area. I feel so bad for him and wish I could take it from him. We have always called them his "special spots" and said we hope he always has them since they make him so unique. He had to drop out of soccer (we live in Texas) because he would play all out and get overheated and get shocky from the histamine release. Once I accidently gave him dexamethorphan for a horrible cough on vacation and he vomited all over the steps of the Library of Congress- he felt like he was going to die. I felt sooo terrible! I always explain that it is not a contagious rash when he has a new person cutting his hair. I try to educate his teachers and reinforce about half way through the year -especially when it gets hot out. I give him Zyrtec every night and Benadryl as needed and have an epi-pen for him. He is very thin and has chronic stomach pain (seeing a GI doctor who wants to scope him). I really don't see his resolving- I think it will probably (hopefully) stay cutaneous but persist on through adulthood. There is no sign of it letting up. He worries about bees and wasp stings- almost terrified. I don't want him paralyzed by that but, I do want him to know of the risk and to be prepared in case he has a severe reaction. I worry he will overheat in PE at school. We are looking to try indoor soccer for him. he really loves soccer and is very good. I hate that heat and exercise make him sick! How are you all with the foods that are to be avoided- especially citrus, chocolate, pain meds, NSAIDS? I worry about him getting older and drinking alcohol or having sex. His personality is one which I can see him saying fine to never drinking alcohol but, what about sexual activity? Should he premedicate with antihistamines? Scary and awkward! Some good real life advice for a boy will be welcome. Socially he is not phased at this point. He does hate that UP has the word "pig" in it- lol. Sweet boy! He is so beautiful and I am sure all of you are, too!
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