I have a question for those of you with urticaria pigmentosa. Do your lessions come and go? Or are they fixed and permanant? Are they only brown or does anyone get red lessions? I saw my new masto doctor at Vanderbilt yesterday. He said several things that I am not confident of so I am going to do some research for answers. I am going to post a different thread about things he said so I can get some feedback. This UP question is one of them. I appreciate any input on this. Thanks buddies  

Thanks redbird. Sorry you have to contend with those spots. Do they itch all the time or on and off?

I am sorry Lori. I understand your frustration. And crying is ok sometimes if you make sure you get back up and put your boxing gloves back on.
So you get lesions that come and go? Even red ones? I only get one very large one on my lower back/upper buttock area. Been getting this since I was 9 years old.  When it starts its not so big. And if ITCHES like mad. By about day two or three its huge. These little fluid filled bumps appear on top the lesion. Eventually they pop and scab and the whole thing is gone within near a week of onset. I took a picture back in March of one to show the doctor. I  knew it would be gone before my next appt. I showed this to my new Vanderbilt doctor but he said UP lesions don't go away and they are brown. I just want confirmation from the real experts, those who have it, before I accept that this is not what I have. I wouldn't disbelieve this doctor if he hadn't denied other known mastocytosis facts.
Thanks for your help! Hang in there girl.

Hahahaha! You made me laugh so hard Lori. Saying I'm original. With all my oddness my family calls me 'special' and we all laugh. You just confirmed their suspicions! LOL

Well at least you're not alone
Here's a funny one for ya. Last weekend we traveled up to Indiana for my son's wedding. After the wedding we drove back to the hotel to find a recycling plant within a mile of the hotel was on fire. As I was watching from our room window I was commenting about the tall factory smoke stacks but couldn't think of the right word (brain fog here) so I said 'sky pipes'! Haha. Just a little peek into one of my 'special' moments

Ruth,I haven't  heard of that but I will most certainly look it up. Thank you!

Wow I finally heard of someone who gets what I used too get as a child it happened only in between my fingers it would start as redness and intense itching than it would become Hugh water blisters then they would pop and be gone when I was older as soon as I started getting the intense itching I would put tape like surgical tape in between my fingers so I would not itch and it seemed too not allow the water blisters too come I never got it dx it went away and never came back by time I was 17 but I had it from about 9-17 years of age one way getting out oh homework lol

Kim,

I had UP spots since 1994 when they first started appearing.  This past year they have all but disappeared this past winter.  Docs can't tell me why but I still have all the SM symptoms which seem alot worse.  Last week early in the morning while it was still about 80, cloudy and humid I did some yard work, the itching red hive UP spots came back.  I went took a cold shower and took benedryl every 4 hrs because I just kept reacting, flushing, nausea, itching, cramping etc.  The next day I felt a little better and the spots were gone.  I have no clue what's going on, unless they are very faint and I am tan enough to hide them.  But normally UP stays with you for life.  I am just afraid mine are going to come back with a vengence.

Wendy