I was recently asked what my behcets story was.... and it got me thinking it could be helpful to share it with others....
hmmm. I dnt really know where to begin with this one tbh.
I have had a lot of symptoms since birth, however they would come and go, prob lasting no more than two weeks, with months imbetween.
Constant reg mouth ulcers through childhood (but common through family - at least 3 at most about 15-20)
I had a stomach ulcer aged 15 randomly which left me with gastritis.
Reg abnormal abdominal swellings which would last for a few weeks resulting in hosp admittance. I would literally look pregnant. It would happen once every year.... now looks like it was vasc of my organs. I had keyhole surg once and they conf that all organs were swollen with no known reason. so sent me home with cocodomol.
Through childhood i would also have random joint swelling without redness etc that would be written off as a sprain.
The ibs/chrons and migrains started to get worse.
My follucitis looked awful on my legs... as if i had thousands of holes all over my legs with random swellings.
The erythymea noduseum would leave me with huge purple spots on the back of my thighs for id say 3 months at a time, and still i ignored.
Gastritis flares were becoming more and more regular.
I attended migraine clinics for my headaches/migraines with aura.
My jaw started to seize so i started to have botox injections as they couldnt find anything wrong with the joints. It would seize open or seize shut. I prefered shut at least i didnt look like an idiot lol.
I had constant hip and lower back pain which they put down to hyper mobility- left me wheelchair bound in last pregnancy,
In feb 2012 i got my first lot of genital ulcersations, i went to a gu clinic and a nurse said it must be herpes and gave me tablets, next month the same thing and i went back and she said herpes doesnt come this often but gave me the same tabs and fobbed me off, next month the same thing. by this time i was adament my partner had cheated! made his life hell! i stopped sleeping with him and due to the joint pain our sex life has never really recovered tbh.
Then in June 2012, I came down with a sore throat... thr 30th to be exact- my brothers 21st. I remember saying to my partner i dont think id be able to go as throat was sore, i felt feverish and head was pounding, i was also having funny colours in my vision. I was actually cooking the food with my mum for the party. I was persuaded, and did the usual scouse thing, nice dress, big heels, hair dun in fab curls etc etc, dolled up to the nines.
Half way through the evening, my partner had to drive me home to change into flats and something warmer i felt vile.
I fell into bed that night, and didnt get out for about four days i just felt so ill.
sweats, shakes, hot and cold, temp, blared vision, hallucinations, migraines etc.
After that i got up and started moving about but felt stiff. I was seeing to the children and started randomly passing out.
Rushed in royal on one of these occassions as i had hit my head on a corner unit quite hard and they discovered i had myocarditis from the 'virus' apparently... I was in for a couple of days and then sent home.
About two days later- still feeling feverish etc but with no temp, I had this huge random swelling in my knee and couldnt move the knee it was excrutiating, fearing a clot due to having been in bed loads recently with being ill, i went back off to Acc n Emerg.... within id say five hours every joint was the same. They admitted me saying it was polymyalgia. Arthritis caused by a virus that should go within a week.
Two weeks later i was still in hosp now on the infec diseases ward. run every test you could imagine and nothing- not a single thing.
I was discharged with a packet of ibuprofen for swelling and a promise of a referal to a rhuemy.
Ref came through for in 8 weeks time. I was devastated!
I spoent those 8 weeks in a wheelchair hardly able to move.
My own GP susp either Ankolysing spondylitis or Behcets due to family history.
I walked into the office room, bearing in mind id been 8 weeks like a cripple pinning all hopes on this one appointment. I was so excited that someone could fix me. I sat down and he said 'its not AS because your a woman, and its not behcets because you are white' it will be polymyalgia, itl go soon, heres some ametripteline to help you out. and discharged me. I literally sobbed all the way home.
I went to see my gp who was furious and put my on diclofenic and codien etc etc with tramadol- literally did nothing to help me at all... i was still wheelchair bound.
He refered me for a second opinion, which came through for in january- we were in august!
Early sept i went blind for 3 days, vision just went completely.
I went into the eye hospital in a panic.... a blind panic... ha ha .... sorry i had too couldnt resist.
the opthalmologist was abs amazing!!! he called the big boss opthalmologist down who ordered a fleurescin test as through lens everything looked normal. had the test and it revieled retinal vasculitis.
he then put two and two together with me having arthritis, a mouth full of ulcers and asked if i hadd any down below, i blushed and said yes as id been too ashamed to say anything. id been giving my poor bf hell thinking he had cheated on me.
He told me to wait in the waiting room why he did his rounds.
He telephoned the cardio dr who had seen me, the person who saw me for my jaw, the physio i was under for back and hips, the dr i was under wen on the infec disease ward, the rhumey i had seen and had a conference call to join all the dots as he insisted it was auto immune.... they all agreed behcets was the most likely outcome or AS> he ordered a ton of blood tests which i had done that day, and the head rhuemy came to see me there and then,
He diagnosed with behcets from looking at me and examining me. Prescribed prednisolone and some other pills and a ref to the prof moots in liverpool to be under the behcets clinic. Again that came through with a three month wait.
Within two-three weeks of seeing dr kennedy things had improved enough for me to start using a stick at least. I was delighted!
then my vision started to go funny, and i couldnt shake the headaches, i went in panicking it was starting to effect my brain as i was hallucinating, but this time i went to Aintree hosp (early Oct) as i knew the prof was based there.
The acc and emerg called him down to see me, and he admitted me to his rhuemy ward. He was flying out the next day for a two week holiday with his family, would be back for one day and then off to iran for lectures for two weeks). He wrote a care plan and i was kept in for three and a half weeks. during which they tried several things as well as pain management. when he came back i was tons better, id had iv's of pred and meth etc, daily pred and other pills to name just a few, colchicine etc etc.
He discharged me when he himself got back from Iran (trip called short) and i was under his clinic on a fortnightly basis. he started me on Aza in Nov and its gradually been upped to 150mg a day, with blood tests every fortnight and the occ steroid inj when things get too bad. I still need a stick as the aza hasnt kicked in yet, and still have more bad days than good. i still get monthly ulcers but they cause less of an inconvienience. if i have anything planned like christmas or Amsterdam (end of this month) he gives me/books me in for a lovely steroid inj into the bum, which really really helps tbh, it takes the edge off the pain so its more manageable and helps with joint mobility. I still have to use a chair if im going long distances but stick does for short ones. I get fatigued easily though.
within his centre i also have a pain management dr who was amazing, hes helped me so much tbh. A gyne dr who is lovely i also apt have vaginal follucitis, didnt even know that existed. An oral dr who has stated i also have angular chevitis. and obvs the prof himself. along with dr khamal the aintree opthalmologist.
im still under the royal opthalmology team too and also their heart clinic as i have an abniormal sinus rythm they think was caused by the myocarditis earlier last yr.
I still have pain and i cant walk, but it is certainly a lot easier than it was a few months ago.
I reg have bleeds from the bowels, and the prof has ref me to a gastro team who i am seeing 2mo for the first time. I am back at the clinic every fortnight for blood monitoring and every three weeks to see the prof until he feels i am stable enough to go to three monthly appointments.
So that is my story!
I have three children and one step daughter (so to speak), so can relate to how hard it is to juggle motherhood and behcets, I was self emp but had to close the business. Im hoping that at some point in the future i may be able to work again but if im being realistic I dont see how at the moment. My joints are just not up to it at all! even typing hurts.... despite my essays!
so right now im sat here tired. swollen. aching from head to toe with bone pain and joint pains... literally head to toe. a very mild migraine. jaw pain- which i cant click as it splits the angular chevitis which is spreading from corner of mouth accross my face. iv got bowel bleeding again... thankfully seeing the gastro team 2mo! and shall be armed with photographs and my pain diary- which reminds me i best get writing it up to date. Im also very flushed in the face. I have one oral ulcer left as they are leaving me after a week of hardly being able to eat, the week before was my genital ulcer week lol... however i can actually feel another one coming up when i go the toilet and wipe etc.... you know the drill... and my throat is also ulcerating, so no doubt next week itl be back to my mouth again lol!
my current meds are:
Ametripteline 40mg per day
Asprin 75mg per day
Morphine mst 30mg twice a day
Pregablin 150mg twice a day
Azathioprine 150mg per day
Prednisone 5mg a day
lansoprazole 60mg a day
oromorph 5mls every 4hrs if needed (i dont like to overdo it- although i would swear blind its just a bottle of foul tasting water!)
Paracetamol every 4-6 hrs
and iv got the feeling im missing something out.... hmmm memory problems- another symptom lol
I have a cream for the angular chevitis, a cream for below, anasthetic gel for below, an inhalor for below, and magic mouthwash also just as extras.
I also love reiki and carnelian crystals, im a bit of a hippy at heart. to pass the time since becoming disabled i am doing a teaching degree, and redoing my maths and english... i cant work, and this i can pick up and drop dependant upon my joints and flares.
Im also making bathbombs, soaps, shampoos, body washes, conditioners etc etc... and due to being a qualified aromatherapist/teacher i am making wonderful behcet Warrior safe ones!
we have the
'Behcet Warrior extreme Bliss BathBomb' also available as a soap etc
with essential oils to help with arthritis and rhuematic pain, with analgesic and stress reducing effects
iv also invented the
'Behcet Warrior Flake Away'
comes as a bathbomb, soap, shampoo etc for psoriosis and skin ailments.
'Behcet Warrior flare Scare'
A totally relaxing stress reducing analgesic bath bomb/products
'Behcet Warrior bedroom bliss'
an aphrodisiac for those low libedo moments
suitable for men and women!
Been tried and tested by me... and yes they help!
all paraben and sls free
and dont trigger behcet symptoms
not that im trying to flog them or anything lmao...