Behcets and I

Hi i am new to this and never realised that i can talk to all these lovely people out there and all share this awful disease. I am 39 and had behcets from around 9. Starting with lesions on my face mouthfuls of ulcers. I suffered with severe joint pain and was told they were growing pains.I got constant ulcers in the eyes and sore inflamed eyes and then at 12 i suffered badly with pains in my tummy swollen red lumps all over my legs coughing up blood and many other symptoms. I was hospitalised i had my appendix out but they said my appendix were ok when they did the op just the glands around were all swollen and full of Grit!!! I was tested for everything including crohns and all tests came back ok. Ulcers were found in the bowel but did not represent crohns ulcers. To cut a long story short i was told it was all in my head. How can a child make ulcers lesions high temps etc. To this day i still dont feel drs believe what i say i find it very hard. Anyway when i was 16 i transferred to the adult ward where one dr put all my symptoms together rather than treating each symptom and came up with behcets disease but i was not properly diagnosed until i was 23 in Leeds with Proff Chamberlain. I never spoke about ulcers in the vagina to anyone until i was 17 and i was in agony with them so told my mum. My dr was pleased as obviously they were trying to diagnose and this made it easier to say it was behcets. Steroids were used 60mgs and sometimes iv when i was really bad. When i was pregnant with my 1st baby in 1995 i was really poorly and hospitalised for the most part. Baby arrived and i picked up when he was 4 months i was found to be pregnant again (i was on the pill) I was not happy as i was scared i would flare. Lo and behold it started i was so ill and ended up on pethedine for pain. My erethema nodosum was rife ulcers everywhere. My dr at the time would just say ride the storm Mrs Millard ride the storm!! Somehow we rode the storm and my little baby girl arrived safe and healthy but had to be weaned off Pethedine which i felt so guilty for. Most the time i was on steroids which were upped and lowered. Then in 2004 i flared really badly ulcers were all over me from touch (pathergy) i was swollen all over my joints were seized migraine like nothing i had experienced before. I was put on thalidomide, then cyclosporin, azathioprine, methotrexate, which all never worked. After 18 months (the length of time it took to get funding and hospitalised the whole time) i was put on infliximab with methotrexate annd i can say i was like a new person it was fantastic. Sadly my husband decided he had had enough and left me. This worked for 3 years then i had a flare so they then upped my methotrexate and i took a really bad turn and went neutropenic my hair fell out and i was so ill and wheelchair bound and once again hospitalised and specialised nursed as my immune system was 0. After months of special care i was changed onto azathioprine and humira which again worked for me i met a new partner got engaged and went on to have 2 more babies As with all meds they seem to just stop working. My babies are 2 and 1 I am now on humira 40 weekly 90 mgs steroids daily and 20mg Leflunomide and still in a really bad way. I went to see a specialist in Manchester as i live in Cumbria and he said he has no funding to give what i need so i am about to be referred to the specialist centre in Liverpool to see Dr Moots on the hope of Campath or interferon. I just need this appointment now so i can be the best mummy i can be to my girls. They i my reason to get up every day but at the moment i cant even care for their basic needs. Luckily i have really good parents my mum is an angel and my partners mum is a god send to. But i want to be the Mummy doing the mummy things it breaks my heart to see them growing so fast without me. Its all the waiting for apointments that is wasted time this flare started when my last aby was 4 months and it took til last week to get seen it is just more added stress that is not needed. I came across this site by chance and have been so pleased to be put in touch with people like me. I have felt alone with this disease for so long as noone knows what this is like unless you have it. I do try to think there are people worse off than me but sometimes it gets tough.

9 Replies

  • Bless you, sounds like you have had a rough time and been round the houses at the hospital too. I thought 5 years was a long time to be so poorly without a diagnosis. I too had investigations for Crohn's and was diagnosed as having it until another consultant looked at results and decided the lesions and ulcers were not consistent with Crohn's. I was finally diagnosed last summer and was given a high dose steroid injection and put on Azathioprine following a flare, I also take amitriptyline, Tramadol, colchicine daily along with sumitripan when needed.

    I have recently had another flare which put me in hospital for a week. Had MRI scans on my head as docs thought I may have had a bleed on my brain because I had the worst headache I have ever had. Thankfully MRI's came back clear. Was on morphine for abdo pain. Was also passing and coughing up blood. Waiting for an ultra sound scan of my abdo to be done as an out patient. Am still recovering now 3 weeks down the line. Energy levels are 0. It took me about 1/2 an hour to open a bottle of lucozade the other day as I am so weak.

    I am divorced and have a daughter who is 10. Without my Mum I don 't know how I would cope when I am really bad.

    Good to hear you have a new partner and children to give you a purpose to get through each day.

    My daughter is amazing, she is my inspiration and really does help me when I am I'll.

    Welcome to the site too, there are lots of us on here who are in a similar situation to you.

    C x x

  • Lovely to hear from you. I am divorced also after 17 years of marriage he decided he couldnt cope with this disease even though he new about it before we got married (he couldn't cope it would be nice to be able to walk away from this disease) We sound so similar i went in hospital in February ended up in for 4 weeks i had got a bone infection in my clavical which set the Behcets off so had to have iv anttibiotics for 10 days then 5 day iv steroids. I am on so much meds now one to stop the other from doing something. My list at the moment is omeprazole for my stomach amitriptyline citalopram dapsone leflunomide humira steroids co-amilfruse ramipril atenalol calcichew then the mouth washes and sprays difflam corsodyl and becotide inhaler for ulcers in the mouth and below. How on earth do these meds know where to go and what to do?? Half the time i wonder if they are doing any good. I had a scan when i was in and they have found two pitts on my lungs which is a new thing that they have put down to Behcets. I often worry that they put alot down to the behcets and afraid things will be missed because of this. We can get other things as well we are human!! I hope you get your scan soon the waiting is unbearable i know. I see you drink lucozade i go through buckets of the stuff it seems to be the only thing that quenches my thirst and that i feel i can drink. My appetite is ziltch so it keeps me going. Do you understand me when i say i don't have the energy to eat my partner thinks i am mad when i say it but i bet you know what i mean. Thank you for welcoming me x

  • Hi ya,

    Yep I do understand when you say you don't have the energy to eat. Even thinking about eating makes me feel sick at times. Sometimes food just doesn't taste of anything even though I know what it should taste like. I have to drink Nestle Resource nutritional drinks daily to keep weight on.

    Know what you mean about meds too. Don't shake me cus I will rattle lol. C x x

  • Just want to say hi, I know we all get miserable at times but when I read what you have been through it makes me gratefully that I didn't start getting really sick until about 40 - although I suspect I may have had a mild dose for 20 or more years earlier.

    This is a great supportive group


  • hi,

    im new to this site as well and I dont get a chance to log on as much as I would like as ive 2 small children 3 and 4 and I somehow manage to work 3 days a week. my disease is not as bad as yours you poor thing but the guilt I have associated with not being able to do proper mammy things with the children I totally understand. its like I use all my energy for the week at work then ive nothing left......also I hate the fact that my kids have to see me thrown down and unwell...I don't want their childhood memories to be of a mommy who is always sick.....

    all I can say is that I love my children and my hubby with all my heart and im trying my level best to get this disease under control and sorted so life can get back to normal...and I have to believe it will......and yours will too. its not like we are lying under the duvet not bothering.....we will get sorted and our kids will be just fine. plus they are young so they hopefully will not even remember! hang on in there. things can only get better.

  • Welcome to the site.

    You have been to hell and back, by the sound of it. As you get to know us, you will realise that most of us were ill for years before a diagnosis was made (in my case, about 30).

    The medicals profession are getting a bit more savvy about this awful disease, but unfortunately there are still loads who know nothing, and therefore would never make a diagnosis.

    I hope you get your appointment soon to see Dr Moots. At least you will not have to wait for funding for the very expensive treatments we need, as the funding for all this is through the Centres of Excellence. I had to wait 8 years for Infliximab!!!! (This was before the CoE were set up last year).

    I too lost my first husband because I was always ill, but had not been diagnosed. it was tough bringing up two children on my own, but as I read everyone's blogs, I have come to believe that we are all especially strong people, and what you have written only goes to show that you are too.

    I am so pleased that your new partner is more sympathetic, and that as well as your own mother, his mother is too. That must make it easier for your daughters to have a reasonably comfortable life, as they have so many lovely people around to comfort them when you are poorly.

    Very best wishes, Suzanne xx

  • I have to say a bi big thank you to all of you who have taken time out to read my blog and to even then answer. I can't explain how nice it feels to hear from people that are in the same situation as me and know exactly what i am feeling. Two days on this site and what i have got from all of you is fantastic. Why i never did this sooner i don't know but i am glad i am part of this group now.

    Thank you to all of the above



  • Dear Christine,

    I was diagnosed when my baby daughter was 6 months old, though I had had some early symptoms for about two years. Yes, that was a fast diagnosis, made by a new gynecologist who remembered reading about Behcet's. I was lucky that it was caught early and I could begin decent treatment.

    Anyway, my daughter is 25 now and she says that growing up with a sick mother seeemed normal to her. My marriage fell apart, too, but it was helpful that my ex had her 50% of the time and that gave me a break. My daughter recalls that she learned each parent was good for different things: her dad for active fun, and her mom for quiet sharing, reading, movies, etc.

    In high school, my daughter was sometimes a little embarrassed that her mom was sick all the time, but then one of her school friend's dad had cancer for a few years and died of it, so she was thankful that I wasn't going to die of Behcet's. Over the years, my daughter became very caring and nurturing of others who were sick or had disabilities; she never assumed you could tell how someone was feeling by just looking at them.

    She knows I did my best as a mother despite a difficult situation and wouldn't trade me for anyone else's mom. She's not resentful or anything. In fact, just as I think having Behcet's has made all of us better people in some ways, her growing up with me has made her a better young woman.

    I'm sending warm hugs and smiles to you and your kids, Christine.

  • I feel your pain! I have 7 children 4 of my children are grown ups now. I have a 12 yr old girl Magdalena, and a 5 yr old son Noah. I had symptoms in 2009. then had biopsy at Northwestern Hosp. that was diagnosed in 2010 as behcets disease. I am now that symtoms are worstening appling for disability. not a want. a need! Sincerely, Ann marie Gonzalez

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