Urticaria Pigmentosa

Home > Groups > Urticaria Pigmentosa

Support group for people who have Urticaria Pigmentosa, created by eHealthMe (http://www.eHealthMe.com). To join the group, do any of these: create a post to introduce yourself, ask a question, or simply follow the group.

  • Hi first time in this forum. At the age of 13 was...

    Hi first time in this forum. At the age of 13 was burnt badly (summer/swimming at local pool) and the very next day covered in hives. For many years was advised by docs I have freckles but as we all know freckles do not act or look like masto especially when histemine is released. For the next 9 years not one doc could help me, no anti histamine was recommended & docs ignored my symptoms (too hard box during the 90's). During early 20's found doc in Oz who took a biopsy & we finally had a semi diagnosis. He is no longer alive. Yes still have skin lesions but not sure if I'm systemic as well. Is there any doc in Sydney (Oz) who will be able to completely diagnose me once and for all. Normal GP's never seem eager to help and they say they don't know about this condition. I was even told they don't have time to look into it to refer me & have asked me to do the ground work, find the masto specialist then I will be referred, not forgetting this doc is being paid to tell me this. I can't keep this up anymore as my health has deteriorated after catching this winters virus. Presented myself at hospital with bp 190/123 couldn't breathe, left with heart rate for 6 hrs no assistance in waiting room and eventually told they were too busy to lower my bp. Found Gp whp put me on augumentin x 3 boxes (raging diarrhea on this) & 2 boxes of azythromycin. During coughing fit tore left intercoastal rib and bp is stiil very high. Can't lie down for 3weeks now and sleeping upright. I'm on atacand 32mg & 50mg noten antenolol per day. Heart has slowed down but bp is still running high. Dread taking beta blocker as most of the time feel I can't breathe properly , mind you torn intercoastal doesn't help either. 1tab of zyrtec which helps for a couple of hours but when I have to take 1/2 of antenolol at night it doesn't help. Here I thought if your masto some type of histemine would be administered which is stronger than zyrtec. My eye site blurs too when taking antenolol. Lucky I don't smoke. Does anyone know if this tablet antenolol noten brand reacts poorly with masto people. Also im placed on paxiban (new cardiologist who didn't want to look at me as a whole with all symptoms, but rather look at my heart only. Doc thought masto was connected to masectamy and when gently corrected didnt want to know my symptoms. Now I'm sure you are screaming at me to see another cardiologist. Well I previously have and was told my heart just runs faster & yet the heart report mentioned atrial fibrillation without any meds or follow up (5 years ago now). Mind you this previous cardiologist is highly ranked in Oz & my gp didn't look into it any further either. After that if bp was up all docs would say you must be fighting off a bug. This time around now my condition (masto, hormones, bp) has flared up after this horrible chest virus. I can't sleep, docs have done bloods, 24 urine test all clear even though I have text book symptoms of perimenopause at 45. (Symptoms started at 39, daily on time ritual flair ups, sweats (mum, aunt had the same) & doc saying its not possible. Mum,aunt had clear blood reports, put on hrt & their bp reduced, flushea, racing heart symptoms were controlled. Does anyone know if masto women have higher bp/symptons during perimenopause hence more histame released. Hope that makes sence. I stopped the pill minulet (looked up ingredients) not good & this product was banned in UK for failing to do full risk tests. Why didn't Oz follow their lead. Doc said all is fine with the pill but was not sure he could link my overies not working to minulet as I still had light period on minulet for the past 20+ years. The pill was to reduce acne/period flow but research says my hormones were switched of by synthetic hormones which are bad for me. I listened yo the doc & maybe paying for it now. OMG my poor reader you must be exhausted reading this. You see if the docs would look at me as a whole rather certain body parts we might be able to link some symptoms. I stopped the pill, started vit d, take atacand 32mg, 50mg noten antenolol(1/2am, 1/2pm), 1zyrtec which only helps for a few hours in the morning 20mg nexium with diarrhea (doc acts surprised to the diarrhea side effects), no sugar, no salt, no coffee/tea, NO alcohol or soft drinks, eat a no salicylate diet, still have perimenopase symptoms daily & still have a high bp. Lots of research about Turine and the food which has it (apparently it helps bp) but pharmasist couldn't help when I asked about this supplement. I'm anaemic, lymphocytes up always, diarrhea daily and night terrors since starting antenolol. HELP anyone? I have parents who are ill and who need me around & yet the docs have been very casual about my condition/s. 190/123 bp initially with all other symptoms should of alerted hospital staff/docs but i receieved the type of response let's see how things go in a few months time especially from the gp's. Can anyone direct me to someone in Sydney who will be able to help me with my masto? I will be forever thankful and greatful. Thank you for reading my blurb, had a lot to get off my chest, & now hopefully I will see some light, even a flicker at the end of my long tunnel.

    Post created 1 week 1 day ago

  • Want to hear from others who have been prescribed ...

    Want to hear from others who have been prescribed oral Cromolyn Sodium for many years. I take 400 mg 4X. I have been taking 6 years now.

    Post created 1 month 6 days ago

  • I need to contact others that were prescribed Enbr...

    I need to contact others that were prescribed Enbrel and/or Humira and now suffer from Mast Cell Disease. I became systematic 7 weeks after the start of injecting Humira. I had been injecting with Enbrel for 2 years prior. I have been dealing with Mast Cell Disease ever since, about 8 years now.

    Post created 1 month 6 days ago

  • Recently diagnosed with a Mast Cell Disorder. Cur...

    Recently diagnosed with a Mast Cell Disorder. Curious to know if this is contributing to my recent hair loss and erectile dysfunction. Anyone have any experience with this?

    Post created 5 months 8 hours ago

  • Hi, i would just like to say that it is a relief t...

    Hi, i would just like to say that it is a relief to know that there are others!😮

    Post created 5 months 1 day ago

  • Hi my name is Andrew I have systemic and cutaneous...

    Hi my name is Andrew I have systemic and cutaneous mastocytosis and I have been taking doxylamine succinate for years

    Post created 10 months 3 weeks ago

  • Hello all my name is Jimmy and I have been recentl...

    Hello all my name is Jimmy and I have been recently diagnosed with mastocytosis and very pleased to see there is a group for this.

    Post created 12 months 3 days ago

  • Wondering if there is a connection. A recent bloo...

    Wondering if there is a connection. A recent blood test indicated my B12 level was low so I started taking supplements which seems to have helped

    Question created 1 year 1 week ago

  • diagnosed with cutaneous mastocytosis....OTC herbs...

    diagnosed with cutaneous mastocytosis....OTC herbs etc that may help OTHER than Claritin ??thankx

    Post created 1 year 3 months ago

  • Hello I was recently diagnosed with mastocytosis a...

    Hello I was recently diagnosed with mastocytosis and my specialist would like to start xolair injections. I would love any advice that you can offer. I have a history of melanoma and I am concerned about cancer risk.

    Post created 1 year 8 months ago