I Have Urticaria Pigmentosa

A Urticaria Pigmentosa anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Urticaria Pigmentosa. You're not alone. 123 People

    IS IT U.P.?

    I'm 33 years old and in early stages of diagnosis. I'm not convinced that it's UP, but there's no other obvious explanation either. It started 6 months ago with a couple of big, raised red bumps. I treated them with topical steroid and they would darken and flatten out. I now get...
    scotth1979 scotth1979
    36-40, M
    2 Responses Dec 1, 2013

    My UP

    I've had UP since I was 18 and I'm nearly 25 now and noticed it more when I'd had a drink. I have olive skin so the spots aren't as prominent as they are for fairer skin. For a long while I didn't wear shorts or low cut tops but I am much more happy in my skin now and the support...
    mslilii mslilii
    26-30, F
    1 Response Apr 14, 2013

    Treatments - What Works?

    Hi folks - was wondering if folks could share their experiences with UP treatment.  I've been encouraged by possibilities. Does anyone have experience with UVB treatment?  They say this is the most effective option, but unfortunately it's very time consuming...
    chrisinmaine chrisinmaine
    2 Responses Jun 15, 2009

    So Tired Of The Spots~

    It started after high school for me. I tried to start running to get into shape and the itching would become so overwhelming I had to stop and scratch my legs. This only made the itching worse and several times I thought I would have to sit down and wait a while because I could...
    neonrs04 neonrs04
    31-35, F
    2 Responses Jun 15, 2012

    Has Anyone Tried Aspirin For Urticaria Pigmentosa?

    I took aspirin for a week and it didnt help.
    kjcheatm kjcheatm
    1 Response Jan 12, 2012

    Diagnosed Long Ago.

    I was diagnosed with UP when I was about 6 months old (I now have a 3-month old daughter of my own, so that was a while ago). The spots have since disappeared and my life has gone back to (semi) normal, but the two things that I remember most were having the spots everywhere but...
    sg1282 sg1282
    2 Responses Jul 14, 2011

    Mastocytosis: Urticaria Pigmentosa

    I have always had UP.  A biopsy was done when I was 4yo to confirm diagnosis.  The information they gave my parents wasn't the whole scenario so I didn't learn of all the symptoms until later on (that's another story).  My symptoms are mostly flushing and...
    Sninkle Sninkle
    26-30, F
    1 Response Jan 20, 2010

    I'm New.

    Hello, My name is Nikki. I'm 22 and have suffered from Urticaria Pigmentosa since I was 12, I had suffered previous skin conditions beforehand, and when UP first flared up it was my doctors first case off it, he researched it and said that it will likely disappear between 6-18...
    Mamavonsponge Mamavonsponge
    1 Response Aug 2, 2012

    Having Urticaria Pigmentosa

    I was told I have Urticaria Pigmentosa when I was 3 years old .There are pic of me as a kid in Dr books to show what it looks like . Now in my early 30's. Have not seen Dr for it since my teens since the spots went mostly away . No Dr I see now know what UP is . I feel I still...
    31-35, F
    1 Response Jan 22, 2013

    My Story Of Moderate UP

    Back in 1999 I was at the pool and someone commented that I looked like I had chicken pox...I had the small liver spots on my sides and stomach. Back then I was single staying out late and taking a lot of aspirin afterwards (dumb). It wasn't until a year or two later that I read...
    WilliamWa WilliamWa
    2 Responses Apr 25, 2012


    Hi.  so some of you may recognise this story as one by saffyl, thats me, i had a technical hitch with my coomputer and had to create a new account. any help and advive would be muchly appreciated. i was diagnosed with UP as a baby and have the scars to prove it! all the medical...
    saffronl saffronl
    18-21, F
    1 Response Dec 19, 2011

    I Hate This Condition

    Hi Im from Ireland, I was diagnosed with UP 2yrs ago but i have noticed it since i was 20/21! I went to a skin specialist who told me he only had one other person on his books with this condtion. It has definitly gotten alot worse through the years and im scared to death how...
    deleted deleted
    10 Responses Apr 14, 2010

    My Son Has It

    my little boy was diagnosed at 4 months he had it pretty bad, he is now 8 years old and he is about 70% clear and the rest is fading he uses cream when the heaves itch from time to time and they don't bother him if anyone asks him what they are he just say there his special spots...
    rutmr rutmr
    46-50, F
    Jun 5, 2013

    My 7 Month Old Daughter Probably Has Up. What Now?

    We just went to the Pediatrician for my daughter who is 7.5 months.  She has had a bump on her arm since she was about 1 month.  We thought it was a birthmark.  Just recently it got blisters on it so I brought her in.  The Ped says he thinks it is UP so I looked it up.  It...
    luckymama2012 luckymama2012
    Jan 14, 2012

    They Call Me Kitty Because I Have Spots.

    I'm 21 and have lived with urticaria pigmentosa my whole life. It appeared 3 months after I was born and was all over me except for my face. I had been told my whole life that it would be gone when I hit puberty or when I turned 16 / 17. Well they were wrong. I still have...
    theSpottedLoiterer theSpottedLoiterer
    22-25, F
    8 Responses Mar 4, 2010

    I Have Urticaria Pigmentosa

    Hi everyone, I just want to share my experience with this disease and hopefully people will be able to read it, relate to it, and find comfort in the fact that they are not alone. I am 26 year old guy. I am a young professional and have just started building my career. I feel...
    allspot allspot
    26-30, M
    Jan 19, 2013

    My Baby Has Urticaria Pigmentosa - I Need Help Understanding This.

    Hi.  My name is Nicole.  I have a 9 month old baby girl who was recently diagnosed with UP.  On a scale of 1 - 10, 10 being the worst, she is a 4.  She has marks all over her body, face included.  She gets hives and blisters.  I am devastated. ...
    NicoleAron NicoleAron
    36 Responses Jun 10, 2008

    Richard 8month Baby

     My son was just diagnosed with UP.  His 1st spot was noticed by us @2mos old.  At 5mos old he develope a few more spots, by 8mos old he now has 43 spots and keeps on coming.  We were told  by our Dermatologist to use a steroid cortizone cream and a liquid antihistamine...
    7oaksrestoration 7oaksrestoration
    1 Response May 30, 2011

    UP = Suckish...

    Heyo, My name is Dominic Paris, Im 15, and i have had Urticaria Pigmentosa since i was a Tot, i was actually born with it, sadly. I have seen Many Many Doctors, One being Dr. Schachner From Miami, It was said to go away at puberty, but thats past, and i still...
    DominicIsCool DominicIsCool
    5 Responses Mar 31, 2009

    It is such a relief to know I am not the only

    one who has UP! I had it when I was 10 it came from no where! The worst part was having to wear shorts in P.E and everyone looking at me like I was a monster! I have tried it all, had a patch allergy test, puva treatment and UBV ultraviolet light. The treatment that meant I had...
    hphillips hphillips
    22-25, F
    1 Response May 9, 2014


    hi. i was diagnosed with UP as a baby and have the scars to prove it! all the medical advice i can find says that it often fades during puberty and will usually only flare up if rubbed. im 19 and well past puberty and mine seems to be getting more prolific and spreading further...
    saffyl saffyl
    Dec 19, 2011

    I Hate The Way I Look

    Hi ive had UP since i was an infant. I am currently 19 years old now and still have UP. It has not gone away or lessened over the years. I feel like my spots are just getting worse. Being a teenager who has UP has been really tough all througout my life. I have had to deal with...
    leopardgirl100 leopardgirl100
    18-21, F
    4 Responses Mar 2, 2011

    One Crazy Question

    Hi I am a 43 year old male who never really minded the UP. Find out what food flares it up because in most cases it does. And get some sun. It helps me. And to the young people, it didn't stop me from dating beautiful women and end up marrying one. Have confidence in yourself...
    Lfrascella Lfrascella
    2 Responses Aug 15, 2012

    Urticaria Pigmentosa----help!

      I have Urticaria Pigmentosa.  I am 33 and noticed it when I was 24 yrs old.  I went to the dermatologist and she just said it was an irritation.  It has gotten progressively worse and is all over my body.  I see that it comes out more when I am hot...
    Nikkibijou Nikkibijou
    31-35, F
    11 Responses Jun 23, 2010

    Clearing Up Spots

    Hello there, Does anyone know of any treatment for clearing up spots caused by UP? I had UV treatment done a few years ago but found it didn't help much. My spots aren't too itchy except when I exercise so it's really just the embarrassment of how I look that bothers me. Thanks
    IhaveUP IhaveUP
    Oct 4, 2012

    Read - This May Help!

    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...
    libslife libslife
    26-30, F
    3 Responses Jul 16, 2012

    Hi Im Just Like You!!!

    Im 14 and I have had this sence I was born. my mom still crys about it.i have had some problems with the desease.but they havent been like some of yours. someone once told me that will go away when I was at 10 and they were wrong. I will pray for anyone just let me know if u want...
    Analise Analise
    13-15, F
    2 Responses Apr 29, 2012

    Help Us!

    My 2 year old daughter was recently diagnosed with UP and it seems to have her doctors baffled!  My husband and I have been researching as much as we can on the web but I am coming up short on some things.   I have read that Asprin is a big no-no but what else...
    ilovemyspottygirl ilovemyspottygirl
    26-30, F
    7 Responses Mar 4, 2010

    Lordy Lordy I Still Have This And Im Soon Turning 40

    when i was 14 i start noticing some brown spots following a path up the middle of my leg..never thought too much of it at the time, then one day i was at the beach and this random person said these words i never forgot "my god whats that all over your body"..it made me take a...
    marquis913 marquis913
    36-40, F
    1 Response Jan 20, 2012

    How The Heck Do We Get This And Why Do We Know So Little?

     I am 25 and slowly over the past couple of years I developed little brown spots all over my trunk and chest and noticed they would occasionally itch and become red and swollen-hive like. I honestly thought they were freckles that were developing but upon a routine physical my...
    JollyGreenKelso JollyGreenKelso
    1 Response Mar 28, 2011

    Just Spots??

    Hello all and thank you for sharing your comments. I am frustrated by this condition - but at this point I count myself very lucky. Friends of mine first noticed patches of spots when I was in my mid to late 20's. Since I had had chicken pox twice as a child - I wondered if...
    bharp5 bharp5
    41-45, M
    Mar 23, 2012

    My 9 Month Old Daughter Is Getting Better

    Hi there.  My 9 month old baby girl was diagnosed with UP at 5 months of age.  She had one big lesion on her knee and about 30 more spots at this point on her back mostly, but a few in her diaper area and stomach.  I noticed as a baby that she had very and I mean very foul...
    mom2moms mom2moms
    31-35, F
    5 Responses Mar 6, 2011

    My 2 Boys Have Urticaria

    Hello - We just learned that our 2 boys, age 3 & 5, have Urticaria.  I noticed symptoms when they were each about one year old and asked my doctors about it.  Have to admit I am a bit upset that both our dermatologist and...
    michellegnold michellegnold
    1 Response Jul 20, 2010

    I am the mother of a girl with Urticaria

    Pigmentosa since she was 4 weeks old. She is now 9 years old as of 2015. She has many tiny spots all over her whole body, too many to count.
    MotherofUP MotherofUP
    41-45, F
    Oct 14, 2015

    Living With Up

    Hi, I have UP, I was diagnosed at the age of 22, although the spots appeared on my thighs when I was 15yrs old, and my first visit to the Doctors, told me I had fat spots, which was Ironic, since I was, by no means fat,lol. Once diagnosed, I was referred to a dermatologist and...
    bellykissangel bellykissangel
    36-40, F
    1 Response Aug 8, 2011

    Uc Is Impacting My Life

    I've had UC for a few years, it started off with just a few spots on my back, now it's covered my body. My face is thankfully untouched so far, I fear this like the plague. It's summer now, and I feel uncomfortable wearing t-shirt for the spots on my arms. I used to surf and...
    mrspotty mrspotty
    36-40, M
    4 Responses Jan 12, 2013

    Questions About Up

    I am 34y/o and recently found out I have UP. I am also scared to death due to the possibility of mastocytosis. For those of you that have UP do you know why you have flare ups??? I have been getting more and more spots on my legs and are unsure why. Could it be from our new puppy...
    phyl6474 phyl6474
    4 Responses Jan 4, 2009

    Urtcaria Pigmentosa

    I am 47 yrs old and have had Urticaria Pigmentosa, since birth. I developed the brown spots over my entire body, except lower legs. The only thing I really remember is the stares. Back then very little was known about the disease. My parents were sent to many specialist who...
    diego1 diego1
    6 Responses Aug 31, 2008

    My son got this at age 2 mos,

    I believe from vaccinations. I'm curious if anyone who has this has NOT been vaccinated.
    gvanluven gvanluven
    46-50, F
    1 Response Jul 24, 2015

    My UP Story, Age 35

    I'd first noticed some spots on my wrist and thighs around 12 years ago. My Doctor sent me to a Dermatologist at the local Hospital and i was told it was nothing to worry about, they probably would spread and i was very 'textbook' I walked away forgetting the name of it but...
    ohyellowone ohyellowone
    36-40, F
    Nov 5, 2013

    My Story...

    I started getting hives on my thighs when I was 17. I would scratch them to the point of bleeding and then began seeing the spots appear. I thought they were scars. For years they were just on my thighs but a few years ago they started spreading and getting worse. I was...
    Eeakin1 Eeakin1
    31-35, F
    1 Response Apr 18, 2012

    Just Diagnosed Urticaria Pigmentosa

    I have just been diagnosed with Urticaria Pigmentosa and have been told their is no cure, only antihistamines if it gets worse. I have had it for years and I have little red blotches over most of my body.Thing is they don't really itch or get irritated or anything, it's just...
    Lizzyjj Lizzyjj
    41-45, F
    2 Responses Dec 11, 2012

    Low Self-esteem Due To Up

    I've been diagnosed with UP ever since I was a baby. The dermatologist had told my parents that it would slowly fade as I hit puberty. I am now a 16 years old girl. The spots haven't gotten any better. I feel so embarrassed to even walk around the beach in a bikini. Never have I...
    ohdearyou ohdearyou
    1 Response Jan 6, 2013

    Need Help Understanding U.p.

    I was recently diagnosed with Urticaria Pigmentosa. I have so many questions about this condition, I don’t really know where to start. About me.. well I’m a 22 year old Irish American girl with extremely fair skin. I am covered head to toe (with the exception of my face and...
    amccann862 amccann862
    5 Responses Sep 14, 2011

    I've had UP since infancy.

    I'm now 21 and it hasn't improved at all. The problem for me is the appearance, not the physical symptoms. My UP only flares up and becomes itchy & painful very occasionally and an antihistamine always clears it up. However you can always see it and it is all over my body. They...
    emmalouiseb emmalouiseb
    22-25, F
    1 Response May 30, 2014

    Hi, I don't know if this forum is still used,

    however, I wanna share my story with you guys. I was diagnosed with UP when I was 2. The doctors all said that there is no cure, we can just wait, maybe it goes away during/after puberty. I know that I am only 17 and there is still "hope" but I just do not have the power to...
    RandomUsersSuffering RandomUsersSuffering
    18-21, F
    1 Response Oct 6, 2014

    My Baby Has Up

    My Baby has UP she is now 1yr,she got it when she was 2mo old she is 1 now.it was so had at the beginning because her DR. said it was like bed bugs bites,I felt that was not the cases so I took her to children's hospital in CA,they told me there were scabs.I new that was wrong to...
    esperanzahope esperanzahope
    3 Responses Apr 14, 2009

    Spotted Confidence

    Hey I'm Liz. I'm 23 years old and I've had UP since I was born. I have it all over my body except for my face. It faded the most from when I was 1-18 years old, and now it just stays the same, or some years it's worse. The doctor said it would be gone by the time I was 18, and...
    vaughan22 vaughan22
    2 Responses Jul 29, 2011

    I was diagnosed with urticaria pigmentosa in

    1997 a few months after birth, and was covered head to toe in red hives. The doctors didn't really know what it was and I would be in a room with loads of doctors all asking my parents about the condition and I have suffered with it for most of my life, at primary school I was...
    Charlot96 Charlot96
    18-21, F
    2 Responses Jan 26, 2014


    I am 19. I have urticaria pigmentosa, and I have as long as I can remember.It plagues well over half of my entire body.. my chest, my neck., stomach, back and private areas.This causes me to be highly insecure. I do not wear my hair up in a ponytail or bun in fear of being...
    sarah2615 sarah2615
    1 Response May 9, 2012

    We Are More With Up Than I Thought

    Hi all!First of all please excuse my english! ;) Im 32 years old and from Denmark! I too have UP and have had it for approx. 15 years. It startet when I entered the military. The first doctor i saw thought it was something else and gave me some creme. A few years later i was...
    Madsen79 Madsen79
    Feb 6, 2012
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