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Hi. I have been very unwell for two years. After many different hospitals and doctors i have been diagnosed with Behcets. I have all the symptoms that i have read on here. I also get a very stiff painful neck, does anyone else have this also?

I am under Addenbrooke hospital who seem very good. I am at the beginning of my treatment path, up until now i have been on steroids which have kept me well all summer came off them 4 weeks ago, addenbrookes started me on colchicine at my last appointment but they gave me terrible tummy cramps and sickness. Back on the steroids today as i have started to feel awful again and can only about manage to do the essentials. Back to the hospital in 4 weeks to discuss new medicine options. All very scary to be honest and just starting to realise that this is not going away :(

Glad i have found this support forum as i have found out so much info and its so good to know im not alone!!!

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  • Also forgot other symptoms I get when feeling really poorly is hot sweats and chills and a really load grumbling tummy! Oh the joys! Does anyone else get any of these? :)

  • Hi Joanne,

    I too found this forum a couple of months ago but was diagnosed in January, but I too have been ill for quite a few years. Finding this forum has made a huge difference as before I did feel very alone as a lot of people don't realise how bad it can get at times or haven't even heard of it.

    When I was finally told what was wrong with me I was over the moon because somebody finally knew why I was so ill, but that didn't last long because then when I was told more information it was very scary and made me feel very down and this forum has helped massively with this.

    I too had terrible side affects with Colchicine and had to come off it but it did help get rid of ulcers. Have tried quite a few different medications but still waiting for something to work and really sick of being on steroids all the time.

    I too have all the symptoms and one of those is a stiff neck that sometimes causes me to be sick because it causes terrible headaches. But I also have such painful bones and muscles that causes me to completely seize up, do you get that too?

    Hoping you feel a lot better soon.

  • Hey. Thank you so much for the reply and for the info.

    Such a scary horrible time before being diagnosed, I thought I had cancer or something awful as I felt so ill. Have also been very low in myself since being poorly.

    Gone from health freak in the gym all the time not even taking any medicine apart from vitamins to taking really toxic medicine and being sofa bound. Horrible!

    The colchicine did help me with the ulcers too but the stomach cramps were so bad I couldn't stand up. Very daunting thought having to try all these new medicines. Really hope they find something that works for you and doesn't give you any nasty side effects.

    Don't like the idea of being on steroids either. Sounds very similar to what I get. Feels like i ache all over, muscle and bone. So stiff and achy. Like you feel like I'm seizing up. Get painful and twitching legs too. Can't ever get comfortable.

    Hope you get better soon too.

    Jo

  • Hi again,

    I know exactly how you feel. I was a very active mum with three children and self employed with my husband, enjoyed a social life and loved going to aerobics amongst other things. But like you I struggle to do the essentials now because of feeling so unwell and mobility not so great. As well as getting down sometimes I also permanently feel guilty not being able to do things with the children like I used to. My husband has also had to do the majority of the work in our business now, after seeing how ill I get he insists on doing everything. I think half the battle also is if you have a very supportive husband and family and I am grateful for that.

    Now you have been diagnosed, you will see on this forum that you may have to try many treatments before you find one that works for you.

    It isn't surprising you feel low as it is a lot to take in, and it does seem to take over at times. Hopefully now you have found all of us you can start to feel less down, as this is a place you can have a really good moan and people understand.

    Take care of yourself and hope you get the medication that works.

    Love Jo.

  • Hey again. Thank you so much for your support and advice.

    I also run a business with my husband and like you feel very guilty that I can't do the things that I used too :( my son is 6 and is used to me being very active. Feel like I am always telling him that I can't do things becauae I don't feel very well, he says mummy you are always not well! :( makes me sad. I have a very supportive husband who has come with me to every hospital appointment and been there through everything, very grateful for him.

    My daughters are older and help me too which is brilliant.

    We have to be kind to ourselves and stay positive hoping one day we will find something that works for us :) I feel more myself and have more energy on the steroids but I know I can't stay on them for long.

    Would be nice to read some success stories of people that have found medicine that's worked for them. Will have a good look through the forum to see if there are any.

    So new on here :)

    Take care of yourself too

    Jo xx

  • Hi and welcome

    I was diagnosed 3 years ago and like you suffer all the the above things that you have mentioned. I have been on steroids for 3 years and unable to come off them as I flare up really bad. I take Methotrexate which really helps. I still get the night sweats and chills, but I had these before all the medication so think it is a Behcet thing. I also get twitchy legs and headaches and neck ache. But these are all things that I have had to get used to. I manage to work but have had to change my career from being a Paramedic to a desk job. I can no longer exercise like I used to because I suffer afterwards but you learn to live with the problems and at the end of the day there is always someone worse off than you.

    We are quite a positive bunch of BD sufferers on here and you find we can keep our sense of humour where possible and feel quite able to have a whinge and a moan.

    If you have any questions or just want to rant you have come to the right place.

    Hugs

    Angela

  • Hi Angela

    Thank you. Brilliant on here. Already feel a bit better about it all.

    The sweats are horrible! Never experienced anything like it, and everytime I move I start shivering. Will just have to except its all part of the behcets. At least I know that is normal, before I found out what I had I literally thought I was going to die and no one was going to find out what was wrong! Dramatic I know, haha!

    Shame that you had to change your career, at least you can still work with this. My husband and I run a business so I work from home which is a god send as I don't think I could have made it in to work some days. Think its a case of excepting it and adapting our lives.

    Its good to have a whinge and a moan :) least I have somewhere to do it now and give my poor hubbys ears a rest! Haha

    Take care

    Jo x

  • hi and welcome to the site. i have had behcets for over 35 yrs and it took about 15 yrs to get a final diagnosis. after trying may different drugs i finally found some that worked for me and have had it under control most of the time for over 10yrs now although i am now borderline about needing biological drugs. i am wary of doing this as i am not keen on having to try to find some that suit me again. you will have periods of time when you feel quite well and relatively normal???? so my advice to you would be to enjoy these times when you can and look forward to doing them again when your flare is back under control.you can still have a good life even living with behcets by not letting it control your life, get your mind set as to the fact that you control it not the other way round. a good positive attitude works wonders although i do know that this is very difficult at times. i am not sure whether you are an actual member of the society or not but they are very good, helpful and sympathetic and have support groups in many areas which are great and a vey good helpline. hope you are soon feeling better. keep your chin up.

  • Hi all,

    I was wounds ring what symptoms you have.. I haven't yet been diagnosed

    But suffer bad with mouth ulsers!!!

  • Hello Carol, the problem with Behcet's is that there is such a wide array of symptoms and it certainly isn't just about mouth ulcers :-D

    The best thing you can do is look at the Behcet's Syndrome Society website, where you will find all the information you need at the moment. The link below will take you there

    behcets.org.uk/menus/main.asp

  • Hi, thank you.

    It sounds like its just trial and error which is horrible when you read all of the side effects to all of this medication. Really hope they find something that works again for you.

    You are right, have to appreciate the good days and I now can think to myself that it will pass, before medication I was permanantly bad. Am normally a very positive person but some days I feel like its just knocked me for six. Sure with time I will get used to it all and at the end of the day it is a part of me and my life and there's nothing I can do about it :) there are always people worse off.

    Yes I have joined the society, looks brilliant. Will look into all of the support groups, think my nearest one is cambridge which isn't too far.

    Take care

    Jo x

  • hi jo

    I was diagnosed about four years ago.. and I still take colchine... what I do is take two in the morning after breakfast and one in the afternoon sometimes two depending on how bad I am...I cant really stomach any more in one day..

    Good painkillers are a must..so get on to your doc!!!

    I get the shivers, bad head cold sweats and general flu symptoms...and the stiff and very sore neck...

    The one thing I do faithfully since being diagnosed is get my eyes checked every six to twelve months..

    I have very bad days, but at the moment (touch wood....lots of wood) iv been good for a wee bit!!!

    I hope you get all the help you need from your doc.. and we are all a friendly bunch on here...feel free to vent as we all know how you feel in some way or another...

    take care and welcome dawnie xx

  • Hey Dawnie

    Thank you for the brilliant advice.

    Glad you are having good days! That's brilliant.

    So nice to know I'm not alone. :)

    Jo xx

  • Hi Jo

    Welcome to the forum, not a nice reason that we all had to meet like this but everyone on here is so lovely and supportive and strong so I hope it helps you as much as it has helped me.

    I too get a stiff neck :) or should I say :(.

    Hope they find something that works for you quickly. I know how bad steroids can be for you but they do make you feel better. I have been given colchicine to take too but am hesitent as my digestive system is badly effected so don't need any help upsetting that haha.

    Anyway I hope you find this very helpfull and remeber we are here to listen no problem is too small :) (something i've learnt along the way)

    Take Care

    Moys xx

  • I also get a painful stiff neck but I also have syringomyelia as well as BD. I put the neck pain down to this but reading all the posts it could be BD all the time. Been diagnosed for 10 years and have been pushed from pillar to post where doctors are concerned. I live in Wales and was seeing a consultant in Bristol for 7 years until one day the funding was stopped. I then had to start over with a new consultant in Wales! Methotrexate didn't agree with me gave me a bad chest. I take Azothiaprine and colchicine and sufazalazine. Now waiting to start Anti TNF in the very near future had all the preliminary tests. Have read on the forum that this really do work and can change your life... here's hoping! Watch this space will update regularly.

  • Sorry to be nosy but what preliminary test do you have to have? I live in Australia at the moment but am moving back to the UK soon. I'm already on anti-TNF drugs and I'm worried that their going to take me off them to test which ones I need again!

    Any info would be great :)

  • Hi Jo,

    Welcome to the site. Like others have said no in the best of circumstances but I being able to chat to other people with BD really helps.

    I too am quite new to the site like so many other, being recently diagnosed and now hopefully on the road to remission. I was properly diagnosed in June after going round the houses at the hospital being wrongly diagnosed with Crohn's at one point.

    I was put on Colchicine straight away when I saw my Rhumatology consultant. It certainally helped the ulsers initially but then I had a bad flare so was given a high dose steroid injection and started on Azathioprine about 4/5 weeks ago. Things seem to be improving although I am still getting occasional ulcers and bad headaches with stiff neck and photophobia. I take Sumitripan at the onset of the headaches which if I get it in me soon enough it does reduce the severity of the headache.

    Feeling like I let people in my life down is also another thing that really concerns me too. I also work in my family business and get frustrated when I have to take time off because I feel so ill. Sometimes getting out of bed is a challenge, let alone contemplating going ready to go out to the office.

    I divorsed my husband who I had my Daughter with over 9 years ago and have been living with my parents ever since. Mum and Dad are great with her and I don't know how I would cope without their support. My boyfriend is also really supportive even though he is working for Tesco and setting up his own business.

    Getting the right treatment for you will be like with many others a bit of trial and error. I think I have been lucky that the Colchicine, steroid inj and Aza all seem to suit me. I had terrible problems with my bowel prior to treatment and even on the Colchicine and Aza things so far are heading in the right direction. Don't get me wrong I have days when nothing I eat wants to stay in me but they are less often than in the past.

    Good luck with finding the right treatment.

    We are all here to listen and share. C x x

  • Thank you for the replys! Good to know that this neck stiffness is not just me :)

    Think the steroids are kicking again today, more energy and off the sofa again, yey!

    So glad I have found you all. So much information and such lovely people on here.

    Seems that everyone is different on different medicines, I suppose it's all trial and see which ones suit us. I have a very delicate tummy, all the medicines including the steroids play havock, acid tummy etc, omeprazole help me a lot. The colchicine was the worst! Really bad pain and feeling sick and the other if you know what I mean! All of the medicines sound so scary to me :( all of the side effects. If they make me feel better though I think I will try anything!

    Hope everyone has a good day :)

    Lots of behcets love xx

  • Hi C

    Wow it sounds like you have been through it! Fantastic that you have great support from your family. It certainly takes its tole on life in every way. I have lost a lot of confidence in this and lost my zest for life which I used to have. I am glad that these meds are working for you, that's brilliant! Just all takes so much time getting diagnosed and to the right people and a lot of the time so unwell :(

    Thank you for your reply :)

    Jo xx

  • Hi Jo,

    BD certainally takes it's toll. Positive mental thinking is what we all need but with feeling poorly and sorting out treatment that suits it is sometimes hard to stay strong and think "I can fight this"!

    We are all here Jo, so have confidence in that you can share anything with us.

    You take care C x x

  • hi all, I'm in limboland waiting for a suspsected diagnosis of Behcet's.

    I am seeing a rheumatologist privately in a fortnight, having had everything but Behcet ruled out by a lovely neuro, hoping to get some treatment. It seems that the only thing I dont have is the genital ulcers....and my mouth ulcers are all on the roof of my mouth.

    Strangely the stiff neck has been a recent onset.

    Feel for you Jo I've been off work since March, am 44 very active and fit previously to this but now spending lots of time in bed in severe pain.

    Jo....would you share how you got diagnosed?

    many thanks Love Jill

  • Hi Marmot

    I had to have lots of blood work, chest X-ray, mammogramme, and a TB test as TB was in my family years ago. Still waiting on the TB test though they don't move very quick over here. Apparently if you have previously suffered from TB then anti TNF could re flare it. Hope this helps.

  • Hi Jill.

    It is really frustrating and upsetting isn't it? Has taken me two years to be diagnosed and have been tested for everything! Is a process of elimination I think. Like you I have spent lots of time in bed and on the sofa, it is so frightening not knowing what's wrong! I get mouth ulcers, occasionally ulcers down below, I have other problems down there, tears, inflammation too which is due to the behcets.

    My story is so long! Will try and keep it short. I spent time in hospital with an infection (toxic shock)and to be honest I think this triggered off my problems because before this i was fine. Went from doctor to doctor, they all thought I still had infection as I was so poorly and because I had inflammation down below they thought it was also infection but all of my bloods would come back clear.I ended up with a dermatologist who after hearing all of my symptoms thought I had crohns disease and then did tests for that and other auto immune diseases, which all came back fine. After all the mouth ulcers and other skin problems they have come to the conclusion of behcets.

    I have spent the whole summer on steroids which have kept me well, forgot how bad the neck stiffness is, my whole body hurts :(

    Feel for you too, it's so upsetting. Life is so different for me now, just hope I learn to except it and try and get on with my new more chilled out life, haha! Always dream of returning to the gym one day. :)

    So glad I have found people on here in the same boat, don't feel so alone.

    Hope they diagnose you very soon and get you started on some medicine, hate being on the steroids but I feel so much better on them.

    Love Jo xxx

  • oh dear tears and inflammation?? OMG I thought it was just ulceration...as if that wasn't bad enough.

    I did have some inflammation down there but my GP thought it was eczema so I put eczema topical steroid cream on it when it flares.....(I wonder if that has saved me from ulceration??) I dont know why but the thought of the pain involved in genital ulceration horrifies me.

    My doctor put me on steroids for a short time just to make me feel better...and they did! the neuro stopped them as they could be masking the full illness :-(

    My biggest upset is that I have lost so much fitness and even though I can drive again I seem to be able to do very little and seem to be getting nowhere in getting into shape...or building up stamina.

    As you said though Jo... I am still glad to be able to get out and drive again so at least I have made progress.

    I had uveitis last month and I am spending a lot of time in the dark as my eyes are so light sensitive...any tips with how to deal with that?

    Thanks for chatting folks, Jill

  • Hi sarah-lou.

    Thank you so much. So glad that the steroids have kept you well, they are like magic to me too, had a few days off them and was back to being awful again. It seems like everyone has to have so much time unwell before being diagnosed, so horrible :(

    Jill I think the inflammation and tears isn't a common symptom for everyone, it does just seem to be the ulcers that is most troublesome. Think its just me with this!

    Once they diagnose you properly and get you on some medicine you will start feeling better and can have some life again and see it differently and maybe even get back to the gym :) :) had a fab summer whilst on the steroids, 2 holidays, days out to places with the kids, could not have done this without them. Really hope a diagnosis comes soon for you.

    I don't have any eye problems as yet, which I am so grateful for. Sounds terrible. :( I wear contact lenses, my eyes get a bit dry sometimes but that's it. When is your next appointment? They seem to take so long don't they?

    Have a fab weekend everyone :)

    Jo x

  • Hi Jo

    In humans, eye, skin, genital area, lungs and central nervous system disease, Behcet's disease continues to progress with the tedavisininde to be different. My disease was active in the duration of remission was 24 years. In my country, I did not go in control. The natural right of every patient to call the treatment of disease. I hope that soon, the developments on the treatment of disease.

    Wishing you a peaceful life;

  • Hello Jo and welcome

    I'm a bit late to the party cos I've had a rough week or so - consultant reduced my steroids and then went on holiday for a month! I'm supposed to be reducing a gram a month but nope - staying where I am until I can see him. He's got me monitoring my blood results and the inflammatory markers have climbed significantly.

    You've come to a good place! I think we're all a bit more assertive (if we needed to be) now that we know a bit more about each other's symptoms. The sweats is a big one - loads of us suffer from them but not many of us knew they were a BD symptom! It don't half ease the worry knowing you haven't got another disease or problem on top of the Behcets.

    You'll find a whole range of symptoms here - BD is certainly not just about ulcers, which is sort of what I was led to believe when I was diagnosed - 6 years ago I think, something like that anyway. I was told joint pain, ulcers and acne-like skin problems - all of which I had. I had other symptoms too but nobody told me they were due to the Behcets!

    Never mind, the days of not knowing enough are over. I learn something new most days on here. And I've made some very good friends too. How wonderful is that?

    I wish you well and look forward to sharing our Behcet's journey.

    love

    Di

    Now I've read this it sounds all sort of formal - far from who I am! Just give me the benefit of the doubt eh?

    x

  • Hi Di

    It is brilliant on here, like you have said I am learning something new every time I come on here. The sweats are horrible! Thought I was going through an early menopause on top of it all! So good to share all the symptoms and experiences. Everyone seems lovely on here :)

    Well I hope they can sort out your medication very soon so you can start feeling better. So horrible :( hope you feel better soon.

    Take care

    Jo xx

  • Hi,

    I was diagnosed 18 years ago whist struggling to finish my A-levels. I started on the usual prednisolone (40mg), colchicine, azathioprine and calcitriol. I continued with this cocktail of drugs until I had 2 'explosive' episodes 12 years later.

    My throat had ulcerated and I hoped that it would get better. It didn't and I awoke at 2am coughing and spitting blood. I had ulcerated a 1cm cratet in the soft palate in back of my mouth and all in lost between 2 and 3 pints of blood! when this occurred for the second time only 6 months later my medication was changed.

    The azathioprine was swapped for Cellcept 500 (mycophenolate mofetil) and this worked well until 2 years ago when my throat erupted again. I knew that it was coming, so had a bag packed ready. I waited until 8am and merely caught the bus to hospital and checked myself in.

    This time, the specialist decided that he was prepared to use his research funding to pay for an experimental and expensive biological drug called Infliximab. I now go every 6 weeks for an infusion which takes 2 hours. My work is very understanding and allows me to work around my illness (which I refuse to say is a disability!).

    So far, so good.

    My hospital is UCLH London, and my specialists are Prof Ehrenstein and Prof Isenberg.

    uclh.nhs.uk/OurServices/Con...

    uclh.nhs.uk/OurServices/Con...

    Thanks for reading my rant!

    Andrew

  • Hi Andrew.

    Thanks for sharing your story, wow sounds like you have been through it! I also got big painful ulcers In my throat, they are so painful, yours sounds very severe.

    So glad you are getting the infiximab, sounds like it is working for you :) I am early on in the medicine line and only had prednisone and colchicine.

    Take care

    Jo

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