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These stories have been written by members of the UK Support Group. They have been edited to remove any personal data.
AlisonHi Irene, I have been given your e mail address via the Mastocytosis web site as I understand that you administer a support group for sufferers in the UK. My name is Alison and I am a sufferer. I developed the first signs of urticaria pigmentosa at about the age of 24 and I am now 43. I am looking to basically be in touch with other sufferers so that I know that I am not alone! I feel very much like that at the moment. The other reason I am writing is to see how others have coped with the progression of the disorder. I stopped going to see my consultant some years ago as it was simply a case of saying hello, keep taking the antihistamines and see you in 12 months time. I have had PUVA treatment but again that was some years ago and it did help in relieving the itching somewhat. I have however been suffering from more symptoms over the last 18 months or so and it is only through looking at articles on the internet that I have wondered whether this condition is now progressing further. Obviously the place to go would be back to the hospital which I do plan to do. I was wondering whether anyone could tell me before I wait on such an appointment whether the new symptoms I have been having are an indication of progression to the systemic form (something I didn't know about until I looked on the internet). In particular I find that I am unable to tolerate certain foods and drugs because they cause severe heartburn type symptoms. In fact I thought I might have had to go to hospital whilst on holiday in the USA last year when I took Alka Seltzer not realising it contained aspirin. I suffered extreme effects, couldn't swallow, had pain in the chest and into the back that stopped me from taking deep breaths (yawning was impossible!) and developed a prominent bulge underneath my ribs on the left side. It took about 10 days to get back to normal but was quite frightening. In addition certain foods and drugs cause the urticaria to itch, flush and develop wheals. I never used to have this effect so have obviously developed sensitivity in the last few years. I have always been told by my GP that it is indigestion, possibly hiatus hernia. But I wonder how much my GP knows about this condition!? Nobody has ever warned me that this could be a result of this disorder. Can anyone tell me whether this is an indication of systemic involvement? It would be nice to know how others cope with the condition. Previously I have just had to beware of changes in temperature and drip dry after a bath so that I don’t rub the skin with a towel. Visually I find my skin pretty horrible - I started with a few spots on the belly but am pretty much covered now. My legs are particularly bad, especially the thighs. My belly and back are covered, my chest covered and this is where most of the flushing shows. I even have them on my feet, neck and a few on my face. I would love to be able to bare myself in the summer but can no longer do this or go swimming as I feel so self conscious - and yes people do stare. A recent stay in hospital led to one nurse asking if I had measles! Its all so depressing. It would be nice to speak to someone who knows what it is like! I hope to hear from you soon - someone who understands what it is like! Regards Alison Amanda and daughter Millie Also see Millie's story HEREMillie is now five and is doing really well. The marks are still present however she doesn't seem to be getting any new ones. Millie has only had two reactions whereby her skin blisters, one we think was from eating Jelly Sweets and the other we think was from taking Sudafed medicine when she was poorly. On both occasions we gave her Clarytin (Anti-histamines) and within two hours the blisters had gone. We do have an epi pen for Millie but have never had to use it. Millie is soon to be in year one at school and her classmates have been great with her, a couple have asked what the marks are and when she has told them they are her Jelly Sweet marks they seem happy with her explanation. Millie did suffer a lot with her tummy but since turning three she seems to have improved greatly, she doesnt have any daily medication and doesn't suffer with her skin itching. Thank you to Irene and all the members of the Support Group for all your support and advice over the past few years. Amanda and Millie 5 UP Angela's story is being re-written. Please check back soon. Hey, I am Beth, and I have been ill throughout my life (now we have realized that it was mastocytosis but hadn't been aggravated like now). In summer 2004 I became really ill. My year was full of stress and anxiety and very hectic. My parents had split up in the new year, I had a boyfriend who was very manipulating, I had just started my GCSEs, I was teaching trampolining in the holidays, I also did loads of things after school, windband, brassband, helping a my local brownies and going on trips etc that they had organised. When I became ill I was at a camp I go to every year. I became very tried, not hungry and had a sore throat. After a month of me feeling like that we went to the hospital where, after doing a series of routine blood tests they said it was in my head. But me and mum knew it wasn't. So we saw a different doctor who referred me to Birmingham children's hosp and there I was diagnosed with fibromyalgia. I was having worse reactions to foods and my tummy pains and I was throwing up more often and the rash on my back, back pain and joint pain. So my mum was able to get me referred to Leicester Royal. There they did loads more tests which came back normal (MRI, CT, barium meal, X-ray). Eventually I was referred to an allergy specialist in the children's hosp. there he tested my blood for different allergies to food. Also he did a test to see if I was an allergic type person apparently i'm not but my tryptase levels were scientifically increased. We then went back and I had my bloods re-done and they were still raised. Then my doctor said I have systemic mastocytosis. I did a food diary for foods that I can't eat unfortunately there are loads! Some were hard to pin point so I went on a few food diet. Anaphylactic shocks now seem to be quite regular, with yeast I don't even have to be eating the food and I react bad to it. Also chocolate seems to send me into shock. In 2007 alone I've had at least 6 shocks resulting in hospitalisation. I still suffer with tiredness; tummy aches the big 'D', sickness, joint and bone pain itchiness and rash on my back. But the medicines I'm on have helped a lot. I now see Dr Croom in Leicester glenfield At first my college were really good with my illness. But in the second year they struggled to cope. Partly because I was reacting more and I had been partially paralysed from a shock and were fainting. I am doing a btec nd in health studies and hope to become a dietician. I am doing my course over three years instead of two. I've started up brass band and driving lessons. I receive disability living allowance (DLA) but it was a long struggle to get it and many people don't receive it because mastocytosis is not recognised. I'm also waiting to see Dr Gratten who's a specialist in this condition. Recently I was diagnosed with Systemic Mastocytosis after a bone marrow biopsy. I had the brown pigment on my skin for about 11 years but the last 7 months I have had a bad headache and a “fuzzy” feeling. I was unable to concentrate and felt generally ill. My liver and spleen are also enlarged which is a bit of a concern but may only be because I also have gallstones. (If I was a dog, I think I would have had it!!!) I live in Scotland. My consultant has never come across this before and he was writing to the WHO for information. I have an eight-week trial of a drug called Sodium Cromoglicate to see if this helps me. So far not much improvement. Hi to all Masto Members I’m Carol one of your new “recruits”. A big thank you to everyone who contacted me. I am making this a general reply to fill you in on my history. I’m 59 marred with 2 sons in their 20’s. I was diagnosed with Masto/Urticaria Pigmentosa 17 years ago and by the first consultant. I continued to see him in London for many years but government cutbacks meant he wasn’t allowed to see dependants any more so I was transferred to the NHS. I feel quite lucky that the Dermatologist that I saw until last year (when she changed hospitals) was very good in as much as if I suggested something I had read about she would give it a try. I now see a dermatologist and a professor of Haematology once a year plus a consultant for my “bones” at least twice a year. (All of them I can see on a SOS basis at any time). I now have SM which has given me Asthma; I also have Osteoporosis, a slightly enlarged spleen and tenderness around the liver also chronic neutropenia and a raised Tryptase of over 200. Medication is Fosamax 70mg Weekly, Pulmicort and Ventolin, Zoton 15mg daily, Ketotifen 1mg twice daily, Amitriptyline 10mg 3 daily, calcichew D3 two per day. All of which are generally keeping me under control. Well I think that’s enough for now as you will all be falling asleep! Carol Hi Irene, I live in England, I have 4 boys, 1 lives in Holland still since we moved back to the UK last September, he is nearly 21 and wanted to stay on in Holland, his father and all my family still live in Holland so I felt ok leaving him there although I do really miss him. My youngest 3 came with me, Jeffrey 10 has just been diagnosed with Diabetes type 1. Adam 4 1/2 has been diagnosed with Systemic Mastocytosis and recently Primary Immune Deficiency. Luke 2 1/2 was recently diagnosed with Cutaneous Mastocytosis. So the two youngest have got masto. Adam has to have immunoglobulins every 3 weeks, its a day at the hospital while his drip runs through, its actually tomorrow again, the weeks just fly past. We got a call asking if they could use the boys for the exams coming up, I had another call today to confirm it and a letter yesterday, whereas the doctor wanted them for both days she now said it was just for the 29th of June. The hospital I take Adam to for his treatment is St Johns in Chelmsford, the other hospital in Chelmsford is Broomfield at some point they are going make Broomfield a bigger hospital and get rid of St Johns, its such a shame when they do that, bigger hospitals are often more impersonal, we had the same thing happen in Holland, and it just made waiting times for surgery longer and much more work load on the already overworked staff. Ok I have gone on enough, thats my trouble, once I start talking I don't shut up... :-), love Caron I have had Urticaria Pigmentosa (UP) form of masto cytosis since in my late twenties (I am now 65), which my consultant assures me is cutaneous, not systemic. However, the spots each year get gradually worse, especially on the outer thighs, where they now look almost like strawberry marks as the spots are joining together. Once the spots appear, they become permanent. Nothing special seems to trigger the spots appearing, and there is no family history of the condition. The spots get itchy after a hot bath, or sitting in the sun, but usually the itching dies down if I leave the spots alone, otherwise I do not have any other symptoms, such as digestive problems. I have anti-histamine to take if needed, but rarely need it. Hello Masto Group Thank you for your contact of the past couple of weeks. We apologise for our late response, however we have a newborn child as well as 2 year old Finlay with masto, and in addition our computer it playing up making email impossible! Thank you also for all the excellent information we have received. There is so much of it, but we are working through it steadily and learning a great deal. Fin (in hindsight) showed signs of mast from birth, but was formally diagnosed at 6 months old, initially with bowel problems and skin blistering. He has bowel difficulties and stomach cramps, skin blistering and histamine marking, and massive temperature control problems. More recently he has recurrent mouth ulceration and very poor immunity. We have seen a general paediatrician and a paediatrician dermatologist, and Fin takes Piriton and Hydroxyzine every 6 hours (during the day), plus steroid creams and pastes for his skin and mouth. Also Epaderm to moisten his skin and control "the itch"! We also only have cotton clothes for him, and fans everywhere at home! In his short life so far Fin has developed great resilience to his pain and discomfort and is, despite the problems, a happy mischievous 2 year old. We are facing more treatment in the near future (October) with a new paediatrician Doctor (name unknown at the moment) as Fins symptoms have become worse recently, especially mouth ulcers and reduced immunity, so we are looking forward to the York day and meeting as many people with experience and information as possible. Hello my name is Dawn, Madison my daughter has Diffuse Cutaneous Mastocytosis (DCM) she is now 26 months old. We had a long battle to try and get her diagnosed; she was finally diagnosed at 15 months old. At the age of 9 months she would crawl around any knock or bang she would blister. She gets like bite marks which we now know them as hives. She would go bright red in the face. Madison has had biopsies, blood tests, and a scan on her internal organs. Apart from all that she is a very happy child, and my brave little girl. in such a short space of time she has had to cope with a lot, and so have we as a family. She has had many trips to out of hour’s surgery and lots of hospital appointments. The consultant is still trying to get her medication right as she has had a lot of reactions just recently. That is our story, Dawn and Madison Hi I am Eve I have had SM for 3yrs but it was only when I had been going to dermatologist 9 yrs and now a new consultant. He did biopsy on skin then sent me to haematology did bonemarrow biop and SM was positive. I am on interferon inj plus 8 other med but I keep my spirit high. I have a brilliant family don’t want to bore u so I will see you in York bye for now Eve new member.
Dear Irene, Thank you Irene for your kindness to me. Wishing you, and everyone with masto My best wishes, Grace Lucas I am 59,and I was diagnosed with urticara pigmentosa in 1985 in York. I was given puva treatment which made little effect, on the UP other than to make me sensitive to florescent light for about 48 hours. I have had episodes of classic migraine (headache, flashing lights,noise and sickness) which I thankfully no longer suffer from. I have episodes of yawning feeling very cold and tied sometimes being sick (if sick my face swells up) some times just being sick usually with face swelling. When this happens I usually sleep for several hours. My face and mouth have on occasions swollen with out the other symptoms. I get stomach cramps,bloating and diarrhea, and sometimes just feel ill. I also flush under stress. About five years ago I was generally feeling ill a lot of the time and went to see my GP, who sent me to see Dr King at the Dermatology department in Liverpool because she thought a lot of the symptoms I was having could be linked to the UP. Dr King sent me to see Dr Morris the Gastroenterologist who carried out a endoscopy biopsy and found that I was a coeliac. I have been on a gluten free diet since then. While having the endoscopy I had an allergic reaction, and my face swelled up closing one eye completely and the other partly it took about four days to go down. I was given injections at the hospital but I am not sure what they were. I also went to the Allergy Clinic, where it was found that I had high levels of tryptase in my blood which I was told indicated a high mast cell load in my system, but no skin prick allergies where found. At that time a skin biopsy was taken which confirmed the mast cells in my skin, this was taken using a local numbing agent to prevent an allergic reaction. I take Sodium Cromoglicate capsules and Fexofenadine. I have had bone density scans (for the coeliac condition) and they are normal. I also suffer from geographic tongue which was diagnosed at the Dental hospital at the same time. Dr King followed up all the various symptoms I had. I go to the hospital once a year for the coeliac condition, but have been signed off from Dermatology. I have never met anyone with Mast Cell Disease, and do not know if my symptoms are typical. I would like to be included on your mailing list yours sincerely Hazel Hi, my name is Helen, age 51 and I live in Kent. I believe that my UP began to show itself around the year 2000 though it took four years and three different GP’s to get a referral to a dermatologist who made the diagnosis in 2004. I hadn’t realised that the lumps I was coming up in when in bed, after a shower or for no apparent reason, were connected with my spots. I thought the cat had fleas and I was reacting to these! Sorry Twiglet for all the flea drops. I now have some spots pretty much everywhere except palms of hands and soles of feet. Most are on my trunk and thighs. After researching UP on the net I felt sure there was more than the UP going on. I found the Masto-Med list and some members of this list said it sounded like I had SM. I suffered overwhelming fatigue, nausea, diarrhoea, itching, muscle and joint pain, flu-like aches and a myriad of other symptoms but the consultant said that these could not be connected. The UK list had just been started by Irene and I think I was the 19th member. I persuaded my GP to refer me to St Thomas’ in London and in 2005 was diagnosed with ISM after a bone marrow biopsy and consistently raised tryptase level. I have had extensive testing to exclude other illnesses. The known triggers for my ‘masto attacks’ (periods where I experience a sudden big increase in symptoms) are exercise, heat, cold, friction, stress, alcohol and spicy foods. There are a few medications I cannot tolerate as well. It is possible that I react to something when I eat as I get very congested in my throat after food, but have not identified anything particular that causes this and have no wish to stop eating! I am a strict vegetarian, almost vegan so it’s not dairy products, I know these can be mucus forming. I have tried following a histamine free diet with no improvement either. My medications keep me reasonably stable. I take H1 and H2 blockers, Nalcrom and Cimetidine. I have a lot of bone pain along with the muscle and joint aches and pains and my doctors are currently trying out treatments to see if we can find something that will help. I can no longer work, but far from letting this make me miserable, I am learning how to appreciate the smaller things that we normally pass by.
Irene While swimming in Cyprus in very cold water my airways swelled, lips and face, and I know now this was the start of many serious anaphylactic type masto attacks. I had to inject adrenaline on many occasions and was admitted to hospital several times. I also have severe bone pain, flushing, headaches, struggling to breathe and at times angioedema. I was two years like this before I eventually got a knowledgeable Haematologist who had treated a lady previously with Masto and he was able to put it all together. He did Bone Marrow Aspirations, Skin Biopsy and Tryptase and other tests. Systemic Masto was diagnosed. I was on around 20 different drugs daily including Nalcrom but nothing seemed to make much difference. He decided to try Interferon. I have now been injecting Interferon on a daily bases for almost eight years and I am virtually free of attacks. Also within a year of starting Interferon all of the Pigment marks which covered my body for many years have disappeared. Seemingly they are dampened down by the Interferon. At the beginning of Interferon treatment I lost a lot of my hair and it felt as though I had the flu all the time, back pain and headaches but now injecting the Interferon is just part of life and the symptoms at the beginning have stopped. I still have to be careful and steer clear of known triggers, no anti inflammatory drugs, codeine and many others. I was bitten by a Jelly Fish and had a huge reaction and very severe anaphylaxis so obviously I steer clear of these too. I also have Neutropenia - low white cell count. This means I am prone to infections and have had Shingles and Cellulitis several times Irene I am 29 years old and am currently being seen by a consultant at Warwick hospital. Hopefully he will sort out an appointment with an SM specialist soon. I first noticed the pink freckles appearing about 4 years ago and so went to the doctors where they told me it was acne. I knew they were wrong but didn’t pursue it any further. Then in October last year I decided the marks were getting worse and affecting my self confidence so I went again and saw a different doctor. He told me he was sure it was capillaritus and he would refer me to a dermatologist for confirmation. The dermatologist said it was urticaria pigmentosa, and last week, after a bone marrow sample, skin biopsy and CT and ultrasound scans were carried out, the consultant diagnosed me with SM. I am going back to see the consultant tomorrow, as it was a lot to take in at the time, and he was very negative. He told me that he has only experienced this disease with three other patients and they all survived 1 year!! Then said to avoid stress!! Hello to everyone. My name is Jane. I am 39 and married with 2 children aged 15 and 12. I was diagnosed with UP when I was 20. I was told by a dermatologist that there was no cure and to expect more spots by the time I was 30. I have a lot of spots on my thighs, legs, arms, feet, back of hands etc. Over the years I have had heat treatment (a lovely tan) which made no difference and anti-histamines. My legs change colour when I walk, go bright red and sting and burn. They settle down after about 20 minutes but are painful. I seem to suffer more in the cold weather, when my neck and face get sore. The itching is changing it seems to be altering, I don't itch as much as I used to. I suffer from a lot of headaches, feeling light-headed, aching all over, pains in my joints and very loose bowels. I decided a while a go to go back to the doctor and try to get referred. After doing my own research on the internet I thought I am going to sort this out. I know there is no cure but there must be some medication I can take to ease the symptoms. I managed to get an appointment and I saw a haematologist who had heard of it and is going to help me. I had blood taken and have to go back the end of September. He checked my tummy and looked at my spots and asked me lots of questions. At times I was doing all the talking but he listened which was great. I said do you believe me? he said yes. What a relief! I said do you know much about this, he replied "a little”. Which made me feel down again. But after talking some more he said he knew a doctor in Salisbury that he would e-mail. He also said that before my visit here he had been looking on the internet himself. Well at least its a start as over the years I have been told I am depressed and need to see someone! That’s why I have left it all these years. I had a stay in hospital about 5 years ago with an unexplained stomach infection, they suspected gall stones but the scan was clear. I often asked the doctors are my health issues connected with my skin. Always the same answer NO! I believe they are, I am not mad I know my own body! Of course there are days when I feel down and depressed but on the whole I do have good days, I keep busy but fighting against fatigue is no joke! Well thanks for listening, its a comfort to know there is support out there. I would like to say a big thank you to Irene and Angela, two very kind people who have listened and cared. I will let the group know how I get on at the hospital. I would love to hear from anyone who wants to talk either by phone or e-mail. Love and best wishes to you all from Jane. Hi, I am Janet, aged 41 & have systemic mastocytosis, as well as diabetes & an underactive thyroid. I'm married to David & have 2 children aged 18 & 15. we live near Leeds. In 1998 I woke during the night with severe flushing of my face neck & arms, itchy palm, racing , pounding heart, head feeling like it wanted to explode & obviously feeling very unwell. My husband took me down to A&E, where they did lots of tests, but were unable to find anything wrong. After these attacks I feel very sleepy, it takes a couple of days to recover. I also get itchy bumpy legs if I go walking in cold weather & the more I scratch the worse it gets, making me feel dizzy & sick. this is connected to the masto, although I don't have furthur skin involvment. Over the next 8 years, these attacks would happen, sometimes every 2 weeks, sometimes nothing for months & months. Sometimes they are so severe I pass out & struggle to breath, I shake uncontrollably as the attacks pass off. I saw numerous consultants & was diagnosed with various complaints, including abdominal migraine & panic disorder. No matter how hard I tried I could not get these doctors to believe I was not having panic attacks! Although my GP's all thought something was being missed. After a particularly bad attack, where I needed an ambulance, a paramedic said he thought I might be suffering from anaphylactic shock. A& E didn't think so! On returning home I searched the internet, desparate to find out what was wrong with me. The symptoms of anaphylactic shock were spot on for me, but I couldn't find what I was allergic to. I'd cut out red wine years ago, as I was sure that triggered one. I then found one cause of anaphylaxis to be mastocytosis! I phoned my doctor, who looked on the internet too & immediately thought I was on the right lines. She did a tryptase blood test, which showed high levels. Then I saw an immunologist who arranged for me to have a bone marrow biopsy, yuk! This confirmed systemic mastocytosis. AT LAST I knew what was wrong. I take Nalcrom, ranitidine, fexofenadine, epi pen . I've been very well for a year now, but after 3 bad attacks recently, my immunologist has referred me to a haematologist & my medication is being reassessed. I keep clear of known triggers, all alcohol, spicy food, caffeine & hot drinks. Hi our son Evan who is 9mths has just been diagnosed as having ulticaria pigmentosa i have been searching the web and found a few sites but my wife and i feel we would really like to talk to someone who deals with this sort of skin complaint I see on the web site that we missed the group in york are you doing another meeting soon aas we would love to come also would it be possible for someone to telephone us so we could have a chat as we have some unanswred questions we can be contacted Firstly, thank you very much for the many welcome messages from the masto members. My son Angus (21 months) was diagnosed in October 06 with UP, I noticed red/brown patches on his back from about 6 weeks old and mentioned it to my health visitor – she told me it was ecsma, I then spoke to a GP and they said the same, so I left it. I then took Angus to our GP for an ear infection in the summer and he asked me about the brown patches on his head, so I then showed him his back and tummy, he then referred me to the Murrayfield at Edinburgh where a consultant told us he thought it was cutaneous masto. He then referred us to the Royal Infirmary in Edinburgh where he saw a Dr Tidman, he then confirmed he had UP as he showed the obvious Dariers Signs (blistering). Angus was induced and had horrible skin at birth as it was extremely scaly and bled, we were told it was because he was late but maybe it was CM I don’t know, so it is hard to know whether he was born with it or just got it very early in life. He has also had bowl problems for as long as I can remember, so Dr Tidman has now referred us to a Gastro Consultant at Sick Kids, Edinburgh on the 28th March, he also wants him to have a spleen and liver scan and some blood tests done. I was desperate to try and find out more about the disease as my GP new nothing, so that is when I started searching on the internet and found the site in USA, where they referred me to the UK support group I had a very bad spell about 6 weeks back where I was rushed into the "resus department before spending a week in the high dependency unit & then a further week on the ward. Basically my one of lungs had collapsed & the other got fluid into it. At this moment in time we don't know what caused the problem & as you can imagine I am still a little worried about a repeat. Seventeen and a half years ago when I was 57 I was admitted to hospital after having five spinal fractures in less than five months and as a consequence lost five inches in height. I was diagnosed with severe osteoporosus. During my months stay the doctors were concerned about my spots/rash on my thighs inner knees and back. I told them I had had this condition for at least five years and that a blood test had shown no obvious cause. I was sent to a hospital for a skin biopsy. This revealed I had a rare disease called Mastocytosis Several weeks later I had a Bone Biopsy on the hip plus two more which confirmed I had Systemic Mastocytosis. I was prescribed HRT for my Osteoporosus (the only treatment at that time) and Ketotifen for my SM. The later dosage starting at 12mg daily and gradually reducing to 3mg daily. After ten months on sick leave I returned to work for just two mornings a week until I retired. I was seen once a year by my Dermatologist for my SM and I appeared to be allright. However, after seventeen years a routine liver function test revealed I had a ‘deranged’ liver. I was told by a consultant Rheumatologist to come off my medication immediately. Two days later my Urticaria flaired up causing extreme itchiness everywhere. It was agony. It was worse in the evening and the early hours of the morning. I had to waken my husband David to apply Aqueous Cream with 2% menthol to the whole of my back. After about three weeks my skin settled down but this was followed by cystitis and diahorrea and severe intestinal pain. the pain always woke me up at 1am so I used to creep downstairs, make a cup of tea and sit with a hot water bottle pressed against my lower abdomen. I only had two hours sleep for several weeks which left me exhausted. I was then seen by a Gastroenterologist who gave me a thorough examination and requested various blood test investigations. He also requested an ultra sound scan which I have had (result enlarged liver) and a barium enema. He mentioned he knew nothing about Mastocytosis. I now felt desperate about my condition and to my great joy my grandson found Irene’s group on the Internet.
Hi, my name is Joanne, i got
your email address from mastokids web site. He has just had a tryptese test done and are still waiting for any results..Josh's symptoms are the blistering of his skin (still) flushing of the skin,headaches and stomach pains. He Also has bone pain but Dr Messenger says it could just be growing pains which I suppose could be the cause. any information and help would be greatly appreciated. JonathanI had a skin biopsy when the itch first began to bother me in Singapore about 2 years ago, when they diagnosed, well, Cutaneous Mastocytosis - no more detailed than that, and I did not know any better to ask more. They gave me Cetirizine to keep the itch under control, and I was told it might go away of its own accord (mind you, that was by a skin specialist who had only ever seen two cases, both in kids). Saw my GP once I was back in the UK, who was quite knowledgeable about the theory and interested too, but had never seen a case, who made an appointment for me to see a skin 'specialist' here who treated me like some kind of lab rat, and gave me to his interns to play with, and then fobbed me off with more Cetirizine, and told me more or less to get used to it, as it would not be going away. He did not mention it could very possibly get worse, either... I have since seen my new GP, who had never heard of it, and proceeded to look it up on Google as I sat in her office... So now I am trying to find out more about this fabulous, possibly mythical research programme at St Johns - will call them and see if they cannot help I was diagnosed with Urticaria Pigmentosa about 20 years ago and until recently knew next to nothing about my condition; I was told by the doctor who first diagnosed it that it was unlikely to disappear in time unlike the prognosis with babies and children where the symptoms normally subsided and disappeared altogether in their teenage years. I was told it wasn’t life threatening but because of this not much research had been carried out on the disease and I was also told it was primarily a skin condition. Throughout the intervening years I was given UVA and latterly UVB treatment which to my mind was purely cosmetic. The rash soon reappeared and I used to beg my Dermatologist to book me in for more “sun” sessions. Meanwhile I was suffering from many of the symptoms which I now know are Masto related but at the time thought they were due to the stresses and strains of my life during this period. About 5 years ago I stopped working full time and since then I have noted an improvement in my outlook and my skin despite not having any further UVB treatment (I was advised that I had been given a dangerously high dose of this over the years and my chances of developing skin cancer had increased by 25%) Recently about a year ago I decided to see a new Consultant Dermatologist in the area where I had moved to. Tests he organised for me revealed a tryptase level of 72 with all other blood and scan results showing as normal. This year I was able to get to see Dr Crisp at Addenbrookes Hospital in Cambridge. The results of tests he carried out are not yet available so I do not know at the time of writing if my condition has worsened or in fact what my current diagnosis actually is. Due to the tryptase level however it is assumed that there is some systemic involvement now. Generally I feel fine considering I have Mastocytosis with all its accompanying symptoms. However what is fine for me would be considered awful for healthy people (and conversely “fine” for me unfortunately for others would be considered as wonderfully healthy). I manage my masto reasonably well so far but am lucky I don’t have to earn a living and can organise my days around whatever the daily symptoms throw at me. I got your details from someone on the masto website and I would like to be added to the UK mailing list. I have 2 children one with mastocystosis, the cutaneous version. She is 18months and was diagnosed when she was about 6/7 months old. I will be requesting epi-pens, although Annalise hasn't shown any aniphalatic tendancy just knowing it is possible i want to be prepared, this was all news to us! Also she has been on a low dose of antihistamine which did seem to help improve her sleeping but its now worse than ever, so i will be discussing the sodium chromate medication and seeing if teh dermatologist will look into it. Annalise's bad nights are always followed by loose nappies, which i'm wondering if she has a sore tummy, something both the mums i've been in contact with have said is common in the cutaneous form of the dieses, Our registar dermatologist has had us convinced taht bouts of diahorea are a very bad sign, so we've kind of been in denial about it! but knowing that it can be nothing sinister is helping us to look out for it. My name is Maria and I am 8 years old. The type of Mastocytosis I have got is Urticaria Pigmentosa. I have had Urticaria Pigmentosa since I was a baby. I have got dots all over me that stay all the time. When I get hot or cold I get itchy rashes all over me as well that feel like they burn inside and outside. When I scratch them they get bigger and bleed and it really stings. I have cream for my skin when it gets sore but sometimes my skin is too sore to put it on. When I cry it makes my tummy sore. Some chocolate and some sweets make me very sick and give me a bad tummy. When I get hot it makes me feel sick and it makes my throat burn. Sometimes my legs hurt so much it makes my bones in my legs and feet really sore and feel very heavy. It annoys me because other people get to do things I can't because I would get too hot or cold. A lot of clothes itch me so I feel the inside of my clothes before I buy them. When I get sore at school it is really hard to concentrate. I wanted to meet another girl with the same skin as me. Then I found the group and met 2 girls and lots of other people the same as me. When I don't feel well they don't ask me why because they know what I mean. The people in the group don't say that you have got chicken pox or make fun or me like other people I know. I like being in the group because nobody makes fun of me when I see them and they understand how I feel. I’m Kay and we have three daughters, My youngest Leah is aged 7 months. Here is a bit about Leah’s condition. Leah was about 4 months old when she was diagnosed with Urticaria Pigmentosa, she had the spots on her body for about 2 months beforehand but the G.P had no idea what they were and finally referred her to a dermatologist, who knew instantly what was wrong. That was 4 months ago. I was so glad when the dermatologist finally gave me a diagnosis as the 3 G.Ps I saw previously didn’t know what they were, I could finally put a name to it. I didn’t really get much information about U.P at that time, the dermatologist gave me some websites to look up for information, which I did straight away. I found the mastokids website which has been a great help to me and answered a lot of my questions. Leah isnt too bothered by her condition, she gets itchy at times (which I now recognise as she arches her back and wriggles about a lot and has a little moan), I was given piriton syrup to give her when that happened but every time I give her that she is violently sick, the doctor doesn’t know why. Leah hasn’t needed it recently so I don’t know if things are still the same or not. Certain things like bath water temperature and hot weather ( which I don’t have to worry about much here!!!) seem to affect her. Thankfully I haven’t come across anything else yet that does trigger a reaction. But I feel I’m always on my guard. We have just come back from swimming today, I was worried how she would be in the water but she was fine. Leah had a few folk staring at her back (which is the covered in spots) but I’m getting used to that. We have our next appointment with the dermatologist in November and Leah will be getting blood tests done then and also photographs taken then so we can keep a check on the amount of spots she has. I m so glad I was put in touch with Irene as I started to feel no one else knew anything about U.P as everyone I mention it to looks at me blankly so its good to be in touch with you guys. I look forward to hearing from you all. Love, Kay Hi Everyone, I'm Liz and I’m 55. My husband, Roger, was the one who did all the research when we were learning about Mastocytosis. It was he who got in touch with Irene and helped to form the group. If anyone is interested here is the history of my Mastocytosis. When I was about 27 I started noticing spots on my legs, I went to my GP who misdiagnosed it and told me they would go in time. Of course they didn’t but it was a few years before I saw a dermatologist who diagnosed UP. The spots have never been troublesome in that they didn’t itch or flare up unless I exposed them to direct heat, and then not for very long. Through my thirties they got worse and more widespread, mostly on my legs and lower body and I became distressed about their appearance. Eventually I went back to the dermatology clinic and a doctor there suggested Dermovate cream which is a very strong steroid cream. It has to be used carefully as the steroid is absorbed by the body. Initially I used the cream on my worst patches for 4 weeks, by the end the skin became sore and red, like bad sunburn, but this cleared up after a few days and the spots disappeared with it. The Americans are very scathing about Dermovate (they call it something else, can’t remember what) saying that it causes skin thinning and stretch marks, but I have had no problems. I'm not saying that it would work for everyone and the spots do come back, but with careful use over the years I have managed to keep the spots to a cosmetically acceptable level In my early forties I started having a bad reaction if I drank even a tiny amount of alcohol. Eventually, in 1999 I had an anaphylactic episode and a bone marrow biopsy confirmed SM. This progressed to generalised gut problems (attacks of excruciating pain, diarrhoea, nausea & vomiting with symptoms progressing to the point where I was having sometimes having 2 or 3 attacks every 24 hours and losing weight rapidly. I paid to see a gastroenterologist who did some tests and confirmed the presence of “invasive mast cells” in my gut. He admitted that he could do nothing but he did speak with my dermatologist who then referred me to a haematologist. I had another BM biopsy which showed a huge increase in abnormal cells, and a tryptase level which was through the roof. Roger did a lot of research on drugs for symptomatic relief and I ended up with Ketotifen, Loratidine and Cemetidine. In 2005 I agreed to go on a drug trial, AMN107 now called Nilotinib. It was a drug that had been developed to treat Chronic Myeloid Leukemia, but because the cell mutation that causes Systemic Mastocytosis is similar it was hoped that it would destroy the abnormal mast cells. It meant travelling from our home in Cardiff to the Hammersmith Hospital in London frequently. The drug had horrible side effects. I persevered for about 6 months because it reduced the masto symptoms but in the end I had to give up. It had had no effect on reducing the mast cells which was very disappointing. I was therefore rather reluctant to try another trial drug but my haematologist was convinced that this one would be more effective and I have great faith in him, so in early 2007 I started taking PKC412. Again it is a drug developed for CML, it was not on trial in this country and my doctor got it for me on compassionate grounds. I was very worried that I would get bad side effects again and could hardly believe that, apart from occasional nausea, I experienced no problems at all. Within a few weeks I began to feel better, my symptoms abated, I had more energy and in due course my skin began to clear. I have now been on PKC412 for about 20 months. My BMB show a significant reduction in abnormal cells and my tryptase, though still high is much lower than it was. The main thing for me is that I hardly know I have Mastocytosis, I can even tolerate substances, such as alcohol, that would previously have resulted in awful reactions. It is clear that PKC412 is not a cure, when I was without the drug recently the symptoms began to return within a week, but is certainly has transformed my life. Hopefully others will have the opportunity to try these drugs as they come on trial in the UK. I’m sorry this story is so long, surprisingly, it is summarised! I have been extremely lucky in having family who are supportive, especially Roger who has done an enormous amount for the group and having a haematologist who has made sure that he is well informed, has listened and really taken an interest. We need more doctors like him and sometimes it’s up to us masto sufferers to educate them. Good Luck Everyone Liz Hello Irene -the stories from other members were really interesting! Here's a brief outline of where I am. I was diagnosed with UP in 1987 and I am now 59. The only symptons then were an ugly rash on my body and legs which got worse in the sun and heat. In October I had a sudden collapse , unconscious for over 3 hrs, flushing, diarrhoea and vomiting. The hosp. consultant and GP think it was a gastric bug. Having read all the members stories and info. I think it was all linked to UP which I had really forgotten about as I had not had any other symptons. I now want to have some more tests. Liz Hi everyone, I am off to see a specialist next Tuesday, so maybe he will be interested in the ECNM. Am hoping for answers on Tuesday as to whether I have SM or MCAD, I am 53 years old and have had cholinergic Urticaria all of my life, recently due to severe bone pain I started to research it and came across you guys, then I realised that a lot of my ailments were not separate issues after all but were all possibly linked. I certainly think our hormones play a part as the hives and itching etc stopped when I started menstration, appeared during both pregnancies both labours resulted in shocking. During my menses years I only had the Big D that I associate with Urt always resulting in shocking. Since I had a hysterectomy at the age of 35 the itching and hives came back with a vengeance that’s when I was diagnosed with Cholinergic Urt take the tabs go away. I coped after a fashion until 4 years ago when the bone pain and other problems came into play. Anyway that’s my history lol, I hope I am sending this right and it reaches everyone if not then let me know, not too good with comps. Take care, Tana LynneFor the past five years I have seen a specialist once a year for a check-up. For the past two weeks I seem to have taken another huge step up the ladder and the rash is constantly raised and v v itchy, on my legs at the moment. Anti histamines don't work and it is really starting to affect me. I had PUVA about ten years ago but that didn't work either. Maggie and grandson SamuelHello again, Thank you for getting in touch. My Grandson is 5 months old. The marks started to appear on him when he was about 2 months old. He now has brown patches on most of his body. He also keeps getting little blisters on his scalp. My daughter and her partner do not have a computer and that is why I am trying to find things out for them. We would be very grateful for any information you could send us. With Thanks, Maggie Hi I just found your address on the Masto site. Could you please furnish me with any info relating to the support group please, I have been diagnosed with systemic mastocytosis after suffering anaphylactic shock a couple of years ago. I am being seen by a specialist at Addenbrookes on a regular basis . I am 49 years old and was diagonosed with Mastocytosis at the age of 16. As mentioned I have extensive UP, covering most of my body except my face and I have some systemic symptons - like enlarged liver and spleen. The only adverse side effects I have is that I do have reactions to anything alcoholic (although I do keep trying !). I take no medications, very seldom see a doctor and live a normal lifestyle. I have never tried to hide my spots and can still be seen strutting on the beach in my costume My one claim to fame (or so I have been told) is that I am possibly the only person in the world who has confirmed UP and SM, that has run and completed a marathon and an Ultra Marathon (60miles). I have run a total of over 75 marathons and ultra marathons in the past 15 years. My running has taken a bit of a dip in this past year since moving here with all the extra commuting time and weather restrictions, but I do manage to get out every now and then.
Natasha Philip has had type 2 diabetes since 1997. This year he was passed on to the haematologist by the thoracic specialist after a very persistent cough. After a recent bone marrow biopsy Philip was told he had systemic masto. CT scans showed his spleen was three times bigger than normal. No treatment has been suggested and he is now awaiting a further appointment. In 2001 Philip underwent a knee replacement op. At the very end he went into shock and I was warned that he was on life support. Both the excellent surgeon and anaesthetist were mystified as Philip was such a healthy man. He came round two days later to see me, our two sons and the vicar at the bedside!! They have never found a cause in spite of several investigations. We can now only presume that we have discovered the reason and will suggest it (tactfully) to our doctor at the same time as we are requesting emergency shock treatment for us to carry. Hello all, I am a new member and here's a brief intro from me. First of all I have been diagnosed with Idiopathic Anaphylaxis (IA) not Mastocytosis. It all started at the tender age of 48 when I woke in the night, head ringing, itching all over and when I looked in the mirror a face the size of a football. I uttered the famous words to my wife "I think there's a problem". Dashed off to A&E and they did the usual hook up for someone who's going into anaphylactic shock due to an allergic reaction. Of course, the correct course of action at the time. I have never ever been allergic to anything in my life, having lived all over the UK, 3 years in Malta and have worked abroad in Africa, Mauritius and lectured in Russia. My first consultant was a dermatologist who could not find anything to which I reacted. We did the full elimination diet stuff - lived of fresh white fish, white rice and leaf vegetables and water, that's all, no salt, spices, fruit or other veg, just those 4 things + water - his pet theory was that it was either a reaction to salicylates (hence the elimination of just about everything that grows) and also residual antibiotics in the food chain (hence just fresh, not farmed, sea fish). Had an episode on this after 6 weeks! So, unless it was one of the food items, then this was a blank. Added in new foods every few days for a few months this time under the eyes of a consultant dietician, kept full diary of any reactions - zilch! Loads of blood tests etc showed nothing at all, RAST's etc
Dear Irene, I have recently been
diagnosed with having Urticuria Pigmentosa. My consultant has forward The
Mastocytosis Society website address to me hoping I would contact you, as I
know very little about this disorder and hoped you could enlighten me. From
reading the information from the website I believe it is a rare disorder. I
have had a red rash on my legs since I was 27 (5 years ago) and have a few
on my arms, other than that I have no other symptoms. Hello everyone, I first noticed my UP in about 99 – after numerous visits to the GPs I decided I would like them to refer me. I eventually saw a Dermatologist in March 2004, she biopsied me and couldn’t be certain what I had so I was then seen at the Norwich University Hospital. After some discussion amongst the various consultants and professors they diagnosed UP. My dermatologist then said that I was her first patient like this and that I should have a blood test and base line DEXA scan. After 6 months of waiting for the said blood test and scan I reminded her I was still waiting and she had forgotten! Anyway, the blood test in November 2004 showed raised tryptase. The bone scan in January 2005 showed severe osteopaenia. I was then referred to Dr Adrian Crisp a consultant in metabolic bone disorders at Addenbrookes re the osteopaenia and he put me on biophosphates. He then asked if he could refer me to Prof A Green at Addenbrookes so I went to see one of his research students who did a bone marrow biopsy there and then! The results last month showed abnormal bone marrow. I am a candidate for the new AMN107 trial which I will begin in July. Best wishes Sarah Hi Irene, My name is Sharon & my daughter is aged 5 & has U.P, we live in England. I am 36, married with 2 little girls aged 10 & 3 and currently live near Reading in Berkshire. For the last 6 years I have been treated for an increasing number of ‘allergies’. It was only when I suffered an anaphylactic attack in July that I was referred to an allergy specialist (Prof’ Williams’ in Southampton). After numerous tests they concluded that I had what they believed to be a Mast Cell disorder and I was referred to Guys Hospital. I had all my blood work done on Monday, allergy testing on Tuesday (to eliminate any doubt), I should have had my bone marrow biopsy yesterday, but, because I react so severely to any medication we decided to wait for the Tryptase results first. I go back tomorrow for my skin biopsy and then we should start to get a better picture. I have carried an epi-pen for the last two years, but we understand that the Dr’s are concerned with the speed in which this is developing. I take a high dose of anti- histamines daily to try and control the severity of the attacks. This last attack kicked off 7 weeks ago; since then I have lost over a stone in weight and just feel awful… I had various strange symptons when I was young including extreme urticaria in sunlight and sweling of the lips and tingling when I had hot drinks.. oddly both these fizzled out in my 20s though I am still not very well in hot weather. I have an extreme wasp allergy and having been de-sensitized and had it fail, I almost died twice from anaphylaxis after stings and now carry epipen of course.my skins reacts to several other things including Christmas trees ! But it was my general malaise which made my seek an immunologist some 15 years ago...stomach pains, sneezing and streaming eyes, feeling unwell and faint in bouts, aching joints and painful joints...I managed to hit on the right one straight away - referred by the specialist who runs the wasp and bee sting clinic - and he diagnosed Mastocytocis - I had also had a series of bouts of cystitis and fortunately the specialist for those picked up that it was all connected with mast cells.I was put on a regime of clarityn.. but sadly, the consultant I was under contracted a brain tumour and died - a great loss as he was only ikn his late 40s, a lovely man w ho gave all his private patients to his lab technicians who, he said, were overworked and grossly underpaid. We then moved to Gloucestrershire and I came under a GP who dismissed the whole thing apart from the wasp sting allergy as being 'like al those other vague psychosomatic things - candida, ME, they`re all the same, none of them clinicaly proven.' I have gradually been getting worse again and in the end got her to refer me to a new immunologist -hopefully I will find one who knows about Masto. Meanwhile, I have put myself back on a regimne of clarityn and zantac and feel much better - but I know there is new medication out there and self-medicating isn`t the best idea. My doc said the pruritis I suffered was becvause I used bubble bath - I don`t ! So that`s it.. I`m fortunate in being nowhere near as ill as some. But it would be god to get the symptons, especially tiredness and etc., sorted out properly.So many of the symptoms I read about now,k having found the forums, are similar to mine though I don`t, thank God, have many others.One thing I have noted is that several US contribuitors to the mailint list talk about using their Epipens frequently, when they are feeling just 'unwell'.. I was taught by the consuoltant that adrenaline is not without risk and was only to be used in emergency - as in wasp sting when it was to be used without delay. He said 'never be trigger happy with your adrenaline syringe unless you are stung.' I wonder if anyone else has any comment. My lovely consultant was also keen on my getting it in proportion and on the pointlessness of trying to find a trigger for every little symptom -'You`d go mad' he said. You know what your serious triggers are but don`t spend your life worrying about it. You have to LIVE too.' It was god advice and I have tried to heed it. Thanks again for your help and I am so glad to be in touch. I will report on the new consulatant when I get to see her. SteveAs my UP continues to get worse and worse I was just wondering what experiences others have had with anti histamines in regard to helping with the fading(however slight) of their UP. I know that this condition is different for every one of us,but I wondered if people could e mail me with their findings, and I could maybe try the most promising combination I have never taken any medication so far for my UP,as (touch wood)it doesnt itch much.But I am starting to feel maybe the time is coming when I should start on something.
Hi all, since I’ve just joined your little group, I thought I had better let you know a little bit about myself. I just turned 40 this year. I have had the spots for as long as I can remember, which isn’t very long sometimes, but have only had the other symptoms for a few months. July last year I went to my GP as I had an upset stomach nearly every day for a few months. she then gave me a cursory examination that brought up my fact that my spleen was a lot larger than it should have been. she did remark upon my spots but did not seem to dwell on it or pick up on their significance at all. I then went through various scans and a load of blood tests that just showed that my kidneys, liver etc were working ok. I was then referred to a gastroenterologist, I just know I spelt that wrong, who done more blood tests an examination and discussed other problems that I had that I thought were unrelated. he then told me that he would arrange for more scans. I then received a letter telling me that I had systemic mastocytosis and after a full skeletal x-ray, which I had last week, he would have me in to discuss treatment. all that I know of the disorder is what I can find on the net so at this time I am quite overwhelmed with it all. my symptoms are - stomach disorders incl cramps, diarrhoea etc, dizzy spells with brain fog, bone ache, flushes, itchiness when hot or especially when going from hot to cold. hope I haven’t bored you all with my rambling but terrible story telling but today isn’t one of my better days I'm afraid. all the best, Steve My condition started out as cuteaneous masto about 15 years ago. I went to Weston General Hospital where I had a biopsy and the doctor there diagnosed correctly. At the time she said there was nothing to worry about and that it would probably clear up on it's own. However, about 4 years ago, the itching and flushing was driving me mad so I went to my GP. He recommended PUVA treatment and this actually seemed to work. I had the treatment for about 6 months (3 times a week from April to October 2002 ) and the 'spots' almost disappeared. However, about 4 years ago, the itching and flushing was driving me mad so I went to my GP. He recommended PUVA treatment and this actually seemed to work. I had the treatment for about 4 months (3 times a week from June to October 2002 ) and the 'spots' almost disappeared. Then in the winter of 2002/2003 I had some very bad episodes of not being able to breathe (usually at night, when I was in bed. I realise now that it was because I was getting very hot and causing masto symptoms). My GP gave me an inhaler, believing the problem to be a form of allergic asthma. Also at this time I was having problems with my knees and low legs. severe pain in the joints and the bones. Thinking this was due to a motorcycle accident I had had in 1985 (probably osteoarthritis), I was referred to WSM General. The X-rays taken at that time showed shadows on the bones, therefore the doctor sent me to the Bristol Royal Infirmary . To cut a long story a bit shorter, I spent the rest of 2003 and the early part of 2004 taking trips to the BRI and undergoing various tests ( seeing about 4 or 5 different doctors). Eventually, in May 2003, the doctor told me I had Systemic Mastocytosis and set about a regime of pill popping. I now take about 20 tablets per day and although they control MOST of the symptoms of SM I still get the bone pain, headaches, some flushing and itching and tiredness. Some of the 'triggers' I find are physical exertion, Heat and cold, onions, tomatoes, cheese and very definitely STRESS. If I get stressed at work I find that it can make me feel very, very ill. All of the symptoms seem to increase about tenfold. I am now 52 and am concerned that the symptoms get worse over a period of time. Either that or I am becoming used to the medication. My doctor tells me there is nothing to worry about as it is not life threatening and should not develop into anything more serious. Having said that he is learning about the condition as he treats me, so it does not really instil much confidence. My daughter (aged 23) has developed, over the last few months, many of the symptoms indicated by 'mast cell activation disorder'. Although she is undergoing tests by both an allergy specialist (at Addenbrookes, Cambridge) and a gastro-enterologist (Northampton General) including an impending gastroscopy/biopsy examination, we are seeking a 'masto' specialist centre within the UK where they understand the condition, can perform the appropiate tests and provide treatment. I have traced such centres of excellence within the USA ans Canada via the web but am struggling to locate anything comparable within the UK. Before we return to the GP to seek another referral it would be very helpful if we could suggest somewhere to her.
This is Veronica and I am 64 yrs old. I got ill in 1998 and I am in a wheel chair now. I do not have a positive diagnosis yet even though I have had two BMB and a tryptase test done. I was thought to have bone cancer when they first saw the legions on the bones in my neck and on my pelvis. It took three specialists 6 months to come up with masto instead. One of the three was a rheumatologist and he is the one who became the specialist who looks after me. He sees me every six months. I do not have a proper diagnosis for masto but my urine has been tested and has a lot of histamine in it and I have tumours on the bones of my neck spine and pelvis. I did not start having symptoms until I was 58 although my specialist said I would have this all my life. I was very fit and healthy before the symptoms started. Veronica I am on Parriet, Lipidor and Prozac. I carry an epipen and clarity. I am allergic to Zirtec and also Ventolin. My worse problem seems to be a reaction to perfume and of course the depression which is under control with Prozac and a year’s counselling. I can’t eat smoked food or oysters. I love wine but cannot drink spirits. I cannot take a bath as my urticaria comes out in hives – it’s alright, I shower! My one advantage is that I have a doctor’s letter allowing me to skip all those dreadful queues at the airport. I am also claiming disability. (pensions don’t start here until 66). I convinced my reluctant doctor when she last saw me. She said that she never puts on perfume in case I have an appointment. I actually very rarely go to my GP. I said “how am I expected to go for a job interview when the interviewer could be wearing perfume or aftershave?” That convinced her. In my last job which I had for 14 years because I couldn’t change jobs, no one wore perfume near me, markers were banned, etc. etc. I have always been fair skinned with lots of freckles so didn’t take much notice when on holiday in an extremely hot Corfu in 1986 (aged 23), lots more “freckles” appeared at the tops of my legs. They stayed the same until pregnancy in my early 30’s. Shortly after my first child was born, severe stomach cramps and The Big D started. I was diagnosed by my then G. P. with Irritable Bowel Syndrome. After the birth of my second child, I found I could not tolerate any form of alcohol. I was tested for stomach ulcers but none were found and the pain remains severe to this day if I attempt to have a drink. I also found I was needing to go to bed every afternoon for a solid two hours sleep and put this down to having a toddler and new baby. Towards the end of my 30’s we moved and our new G. P. was concerned at the “freckles” which had spread down my legs. I was urgently referred to the local Consultant Dermatologist who diagnosed Urticaria Pigmentosa. He told me there was nothing that could be done. Some patients are referred for PUVA light treatment but that was not possible in my case as being so fair-skinned, it would very possibly trigger skin cancer, he said. At the age of 40 I had a Hysterectomy and the spots went crazy. They are now almost everywhere and can no longer be described as freckles – more like Galloping German Measles. I returned to the same Consultant Dermatologist who told me again there was nothing he could do. In desperation I searched Google and found the UK Masto Support Group. I haven’t looked back. I am now with a Consultant Dermatologist and Consultant Haematologist at St. Thomas’ Hospital, London, who have confirmed via Bone Marrow Biopsy, that my Urticaria Pigmentosa is now Systemic Mastocytosis. They have prescribed Nalcrom for the cramps / Big D and Telfast which is a Mast Cell Stabilizer. The fatigue episodes are now every few days but the rash remains horrid. I hope to be in the next clinical trial of PKC 412. Sally H – 45 / UP / SM / Essex July 2008 Jacqueline and daughter Hannah Shortly after Hannah was born,we noticed spots on her bottom.These later spread to the whole of her torso,front and back,some down her legs and up to her neck.On a couple of occasions,mainly in shops when she got too hot,the spots would become red and angry looking.I took her to the Doctor several times and was told it was a heat rash(despite the fact the spots never faded).I then asked for a referral to a specialist and Hannah was referred to Great Ormond St where she was diagnosed with masto.She would have been about 1 year old. To date,(Hannah is now 5),she has not had any more reactions.When anyone asks,she calls her spots 'her freckles' but is completely unbothered by them,luckily.We holiday abroad every year and the heat doesn't affect her. Jackie. My allergies and food intolerances began in childhood, when dairy products began giving me eczema, and foods containing gluten caused me quite severe digestive problems. In 2004, following a prolonged period of stress and a serious accident, I began having many allergic-type reactions which did not seem always related to the foods I had eaten. I had flushing, itching, digestive dysfunction, dizziness, faintness, visual disturbances, fatigue, brain fog, muscle weakness, joint pain and respiratory problems. When I joined the Masto Group in 2007, I believed there was a possibility some of my symptoms were due to mast cell disease. But after exhaustive medical investigations it turned out the only confirmed mast cell activation I have is in my lungs, which has resulted in irreversible asthma. With the help of an allergist the rest of my odd symptoms were eventually identified as being due to food intolerances. Strictly speaking I should no longer be in the UK Masto Group, but I am glad I have been permitted to remain here for the time being! luv, Steffie
I'm 44 years old with 3 children and was diagnosed with Urticaria Pigmentosa about 10 years ago. This happened purely by coincidence whilst I was visiting a dermatologist to have a suspect mole investigated - I'd actually been suffering with this strange rash that sometimes became raised and inflamed since my late teens! I underwent 2 courses of PUVA treatment with a very small improvement in the brown spots that, at that time were just on my outer thighs. About 8 years ago I began experiencing other symptoms - stomach cramps and acute diarrhoea, palpitations, dizzy spells and bouts of extreme fatigue. I visited doctors time and time again, was frequently fobbed off but twice referred to specialists for cameras up, cameras down, etc. After 2 years I was told I must have IBS and just to take immodium. Again, quite by accident, whilst researching UP on the internet I realised there may by a connection between all my symptoms and that I may be suffering from mastocytocis. I asked for another referral to my dermatologist to check this out and luckily it was a new doctor who took me seriously. She confirmed after blood tests and x-rays that this was likely and as it was so rare the only advice she could give me was to avoid foods containing salicilates and glutamates. I also saw a dietician who gave me some good advice on which foods to avoid. I was prescribed antihistamines :- hydrozyzine and citirizine. Finding the Masto support group was a great step forward for me as it has given me the support, knowledge and confidence I needed - many thanks to all for caring! I have been able to ask my doctor for prescriptions for nalcrom and a referral to a haemotologist to have my condition investigated fully. I am currently awaiting an appointment for a bone marrow biopsy. Kind regards Karen Xx I have just turned 70 ( wow ! ). Urticaria Pigmentosa hit me 29 years ago I do feel a bit of a fraud as so far I have had no really bad effects , as far as I know.All my body - except my face - is reasonably heavily spotted .I do get tired - but can not tell if this is due to U.P. or not. For about 10 yrs. I have had occasional hot /sweaty flushes ,which only last about 10 min. I suffer from arthritis but it is hard to say if this is due to U.P. or just living in rainy Manchester. My main worry is if course the question - after 29 years will I go systemic and if so to what extent ? I believe that all U.P. sufferers do go systemic eventually and that I have already gone - to a very mild extent - systemic. There is of course a danger of blaming my U.P. ( systemic or not) for every little happening in my health ( in growing toe-nails??? joke). I did sell my business when 58 so as to have less stress and be able to relax more. I do believe that the onset of my U.P. was due to me being very run down and stressed out ( divorce ). Everybody is different ,I know, and the onset of U.P. is not officially known ( or proven ) but my tip , for what it is worth , is try to have as little stress as possible ( which in this world today seems impossible !!!). I am 43 and first noticed spots on my arms about twelve years ago. These increased very gradually at first and were not recognised by a variety of GP’s. I eventually asked for a referral to a dermatologist at the Royal Devon and Exeter Hospital and was lucky enough to see someone who was able to diagnose UP straight away. She wrote urticaria pigmentosa on a piece of paper and handed it to me and said it was nothing to worry about. I did not worry about it for five years or so even though the spots were increasing. I did not link a few strange turns, mostly during the night, or my aching legs and hips to the diagnosis. One day in 2003 I decided to type those words that the consultant had written into Google! I got a bit of a shock and actually made myself quite poorly for a few weeks with anxiety, not so much over the symptoms but more over the apparent rarity of this disease. I thought how alone I was. I did manage to recover from the initial shock and visit a few more dermatologists who monitored my condition. Last year my tryptase level was raised and I was referred to a haematologist who I still see. Apart from the strange night time attacks, where I wake with a racing heart, bright red and panicking, aching legs and swollen joints on my fingers I am well. I do not take regular medication but take Claritin for hay fever and if my skin starts reacting to heat or being bitten. I did persuade my haematologist to prescribe an epi-pen a few months ago and he thinks it likely that I have some systemic involvement. I am also going to St Thomas’ for a consultation soon and will also be having a bone marrow biopsy to confirm the diagnosis of SM. I discovered this support group only a few months ago and no longer feel so alone. Everyone seems lovely and so knowledgeable; I have learnt loads and feel so reassured that if I have a new symptom or a question I just start typing!! Guess that’s about it. I hope it’s enough and not too boring! Sally 43 UP SM Calum was around 2 months old when his first spot appeared on his tummy. A few more started appearing on his tummy and back then when he was 5 months old we went to see a skin specialist who diagnosed U.P. More spots appeared on his torso, also a few on his arms, legs, face and sole of his left foot. I always say that Calum is one of the lucky ones after seeing this website. He’s now 8 and has never had any major reactions or itchiness, his only allergy is hayfever and the only medication he is on is Piriteze for his hayfever. He does have the occasional headache but I put it down to tiredness, I don’t know if it is linked to his U.P. I found this fantastic website when Calum was suffering with an itchy tongue and I received some great advice. I still don’t know if it was linked to his U.P. or whether he’d bit or burnt it and kept scratching it with his teeth. The skin specialist told us that Calum would grow out of his U.P. in adolescence. We live in hope that this is the case and will keep you informed! Hope this is in order. Love Maxine xxx |