Diagnosed with bechets 3 years ago still suffering symptoms even though I'm on treatment.is anyone else the same?

Hi I was diagnosed with bechets 3 years ago .I had suffered with Ill health on and off for years .my main symptoms were skin sores bad sores and ulcers in mouth.very bad headaches also and joint pain and extreme fatigue.i worked in a call centre and 3 years ago my boss was listening to my call and noticed I had slurred speech and I was repeating myself.after that everything spiraled I couldn't even walk in a straight line. They diagnosed bechets disease with neurological involvement and I was put on prednisone and colchicine then azothiaprine. I eventually came of prednisone after 12 months but continue to take colchicine and azothiaprine. I am a lot better than I was when first diagnosed but I still suffering badly with fatigue and headaches and my skin is never completely clear. Does anyone else still have symptoms of the disease even though they are on medication for it?the reason I ask is some times I feel I've been misdiagnosed and may be on the wrong treatment?thank you

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  • Hi, I have suffered with BD for over 30 years now and your story is common.

    The drugs help for a time and for all of us this can be one year or seven years or more. Your main drug is usually given for your worst symptom but you could still get some of the other symptoms and need other drugs to take you off one for another. Some people still have slight symptoms, some none but if symptoms have been absent and the return it might be time for a change of meds. Also occasionally a drug that works for one person doesn't for another. We also after a long period with a certain drug have to come off it due to bleeds or stomach problems. I personally also try to have a complete break for 3 months from any meds when I feel I am able.

    I do hope this helps

    Billi

  • Thank you.i suppose I've just expected to much.i expected to get medication get better go back to my full time job but .i don't go a week without some symptoms ,and it's the fatigue and headaches that get me the most.and even though my skin is a lot better than it was I never have completely clear skin there's always something going on at some part of my skin. The meds I take also scare me if I'm. Honest because azothiaprine has some pretty scary side effects so I did hope that one day I'd be well enough to come of them but it's been 3 years now and I don't think I'll ever feel well enough to go back to full time work and able to socialise again 😟thanks again it's nice to be able to talk to someone who understands how I feel 😊

  • Hi Jaynep

    I am very you are still suffering. Are you seeing a Rheumatologist regularly? It is common for BD patients to find thier right doc. What does help, even a little?

    I still suffer with my BD symptoms on a daily basis as well. Like you said, nothing like in the beginning, but still progressing. I take Azothiporine, Methlypred and Kineret inj.

    Don't give up hope.

    Rest well

    :)

  • Hi thanks for youre reply.yes I do see a rheumatologist regularly and have bloods taken every 6 weeks..he doesn't seem eager to try different meds as all my stats are good now when they check bloods..he puts me on steroids when the neurological part plays up.ive had two bad episodes with the brain in a period of 3 years and both show lesions on the brain and the last brain scan showed more lesions than the scan I had 3 years ago,so it's obviously still doing damage.its a horrible disease and has changed my life dramatically and it looks like my daughter is getting symptoms of the disease now also. Thanks again take care 😊x

  • Yes very common but there are other meds available you could try. Have you talked to your doc about trying something else. I have neuro symptoms but not neuro bd and am currently in remission after treatment with interferon. Good luck to you.

  • Hi thanks for youre reply. after my last episode with the brain and spending a week in hospital I did mention different medication. But his response was as I have blood tests every 6 weeks and their all satisfactory since being on azothiaprine that he doesn't feel there's any need to change my meds..every so often I've had to stop azothiaprine for a couple of weeks due to my liver function being abnormally high and my red blood cells count low.but as soon as they come back to normal they put me back on azothiaprine.i just wish I could have at least a month of feeling good .really appreciate you getting back to me take care and good luck to you also 😊x

  • Well I had this from docs I was seeing. I changed specialist in the end. Where are you based? Are you in the uk? I think this is unacceptable treatment. I went through it for a long time too and just wouldn't accept it in the end.

  • Yes I'm based in south wales. Thank you x

  • I know from others on our help group on facebook that treatment is very difficult in Wales. Our fellow sufferers who live there find it really hard to get good treatment. I will ask if anyone can recommend a good hospital there x

  • My heart sank when I saw you were based in Wales as rare disease isn't catered for particularly well there and it can be difficult to get referrals to elsewhere.

    There is a Rheumatologist in Cardiff called Dr Julian Nash who has some experience of treating Behcets although I have heard mixed reviews about him. I do know that some patients from Wales have managed to get referrals to Addenbrookes or the Behcets C of E in Birmingham. Certainly Dr Desmond Kidd is happy to work with local Consultants and offer advice, whether they are prepared to ask or take advice is another matter!!

  • Hi,

    If you have confirmed Neuro Behcets with worsening lesions on scans then I suspect you are under treated. Usually biologic drugs such as Infliximab are used for Neuro Behcets. Many of us have " normal " bloods, they are only a guide and must be assessed with symptoms too.

    Does your current Rheumy have good experience in treating Behcets? It's a rare complex disease and there are relatively few Dr's in the UK that really understand it. It might be worthwhile seeking a referral to one of the Behcets Centres of Excellence, they are nationally funded and the referrals don't cost your GP anything. They also hold the biologics drug budget.

    behcets.nhs.uk

  • A copy of the Behcets drug pathway, I believe it's due to be updated.

    behcets.nhs.uk/images/downl...

    Have you ever seen a Neurologist? The Consultant with the most experience in Neuro Behcets is Dr Desmond Kidd at the Royal Free in London

  • Thank you.im not sure if he has experience with bechets. When they look at my brain scans they say the pattern of lesions isn't consistent with neuro bechets .when I had the report from.my last brain scan it said I had further lesions consistent with small vessel disease (bechets) but when I spoke to rheumatologist he said he had a meeting with a panel of neurologists who said they couldn't sat that it was definitely causes by bechets. So I asked about ms as they have also been querying that but he said it wasn't the same pattern usually seen with that.so he feels the treatment I'm on is sufficient. I have only had two bad episodes in the brain in 3 years so they feel their controlling it the best they can.since I first became seriously ill I am so much better now so I should probably be grateful. I just worry that there will be a time when I have a bad episode with the brain and I'll never come back to normal,as when I've had these episodes I have no memory from about 2 weeks before and a month after.has any of what else suffered from this with bechets?thank you all for replying .I wish you all well x

  • I have lesions on my brain and spinal cord. The lesions on my brain, just like you were told were not consistent with Behçet's. I have quite severe neurological symptoms but it is quite different from true Behçet's lesions. I mentioned that I do know that Dr Kidd is familiar with Behçet's. He is a neurologist and he treats many Behçet's pts with headache. I got to know him a bit years ago at a BD conference. He is in London. I believe someone put his info here.

  • As you see, my memory is poor. I too have small vessel inflammation on brain scans. It kinda freaked me out but I was told it was not Behçet's and also it is a part of normal aging.....I think that sounds odd, but that's what I was told. I have no idea how old you are. I have seen true brain lesions of Behçet's. Perhaps they can show you. I know I was having trouble with my brain. My neurologist says I do have issues , including aseptic meningitis, complex partial seizures, balance issues, swallowing issues, (due to muscle atrophy caused by neuro probs) So I understand how confusing it can be. My neuro probs started about 2 years after oral ulcers/genital ulcers, skin lesions which were biopsied. Leukocytoclastic Vasculitis. I have had it on my arms, legs mainly. I have had many biopsies which have been LCV or show "inflammation" if I am on immunosupressant meds. Which is 20 out of the past 25 yrs when I was diagnosed.

  • Hi I just turned 50 in January so I don't know what age you should be for these lesions to be classed as normal aging.pluss the fact there were a lot more in the most recent scan it had.thank you for youre reply it's nuce to hear from others that have experienced what I have xxxx

  • Hi Jaynep, you posted because you obviously have concerns about your symptoms and wonder if your treatment is effective enough, to me that speaks volumes.

    A number of us have replied saying that there are more experienced Consultants out there who may be helpful and that there are other medication options, your replies make me think that you are talking yourself out of exporting some of these option.

    If you had a complex surgical problem would you see a surgeon that had only done that op twice 2 years ago or would you see someone who had real experience and specialism in that area? The same principle applies for rare, complex medical disease.

    It took me 4 yrs to get my diagnosis and I had to travel from one end of the U.K. to the other ( I stay in Scotland ) seeing experts to get it. I am now on Infliximab infusions and Methotrexate. I accept that I will never feel " normal " again but am so much better than I was and have faith in my Rheumy who is willing to take advice from Consultants in England. I saw Dr Kidd as well who was very helpful.

    No one will care about your health as much as you do. Push until you get your treatment as good as it can be, I would suggest that a Consultant that looks at your bloods but doesn't consider your symptoms to be as important doesn't understand Behcets. They may have shown your brain scans to a panel of Neurologists but unless they have experience of Neuro Behcets ( which is very rare ) then I would question how useful their opinion is.

  • Hi I do try to ask about different doctors and different meds but he always talks Me out of it.my last neurologist felt that the lesions are caused by bechets buy the panel of neurologists felt it was the certain. So I ask why I have these attacks as each time I've had themI've had to have speech therapy ,physio to help me walk tidy again surely this isn't normal and if it's not bechets definitely causing it surely they should look for what is. I need to be firm and ask for a second opinion.thank you 😊x

  • I realise it's not easy standing up to medical staff. The good things about the Centres of Excellence is that they are nationally funded so a referral doesn't cost anything, your GP or dentist can make one as well. The C of E's are happy to work with Consultants up and down the UK. Addenbrookes Hospital in Cambridge have an excellent Vasculitis Clinic and they see a lot of Behcets patients ( Dr David Jayne ) and Leeds have a regional Behcets Clinic ( Prof Ann Morgan ).

    What do you have to lose? At the very least your current Consultant should get in touch with Dr Desmond Kidd for a neurology opinion.

  • Thank you I will mention this to him as I am concerned at how many more lesions I have on the brain in a matter of 3 years and I worry what the future will bring if it carries on as I am still having excruciating headaches.thanks again take care x

  • Dr Kidd is an expert in Behcet's he is very very knowledgeable in this area.

  • I got pretty much the same treatment from docs at coe in London before it opened. For this reason I refuse to go there. They do not understand and mistreat people with neuro symptoms. They are a disgrace actually. Do not have the expertise and don't even listen to opinions of people who know better like Desmond Kidd. I would not recommend them. Sorry but I have to speak based on my own experience there.

  • What sort of lesions are you talking about with skin? The red nodules or tiny bumps?

    Silly question but- how much water are you drinking a day?

    Also- what's your diet like? Be specific please.

  • I have Lesions in the brain .I do have red nodules on my skin also.i try to drink water regularly and I follow slimming world diet as I put on 3 and half stone taking steroids .I would really appreciate if you have any advice for me x

  • Hi I'm sorry to hear you are not feeling well. I am also experiencing symptoms of neuro BD. I'm on prednisone 9 mg, 150 mg azathioprine, and colchicine. Currently I have lower abdominal pain and bloom my urine. I have headaches, arthritis, tingling, pins/ needles and I lost my voice. My urologist requested I complete a cytoscopy to look at my bladder. My Rheumotolgist is considering switching my medication to Humira but I'm concerned about the seriousness of the side effects. She wants me to come off the steroids too but every time I taper down my symptoms are worse then she increases the steroids. I feel hopeless and I'm worried that I won't get better. I was diagnosed with Behçet's in march 2016 after 2 years of seeing various doctors. I've been on steroids for 2 years and I'm dependent on it to work and be as "normal" as possible.

    I do suggest seeing another Rheumotolgist for a second opinion. I did just that a year ago in march and my doctor listens to my complaints and concerns. I'm fortunate that I live close to NYC and have choices of different Rheumotologists in the area.

    I wish you the best and don't give up on yourself.

    Jen

  • Hi Jen,

    I would seriously consider Humira. I am on Infliximab infusions ( another anti TNF ) and they have made such a, difference to my symptoms. The side effects of long term prednisolone ( diabetes, adrenal dysfunction, high BP, oesteoporosis, arterial plaque to name but a few ) are worse than biologics in my opinion. If you can't taper down the steroids then Azathioprine is never going to control the Behcets.

  • Thank you for your advice. I will discuss with my doctor in my next appointment.

  • Hi

    A second for Humira. I have recently come off along term course of Humira, primarily for Uveitis, and my BD symptoms came flooding back. The correlation being that the Humira worked for me.

    It wouldn't hurt to mute it with a knowledgeable Dr. I understand the biggest reluctance to prescribing it is the cost.

  • Hi I had bad stomach pain and abnormal liver function for awhile. I didn't think I would ever come of the steroids as the minute I reduced them things became worse..but I decided to wean myself down time I got off them myself as I had put on nearly 4 stone and the weight was causing me problems also.i suffered in the beginning but I then got better. Every time I have a flare they tell me to take them but I persevere for 2 weeks and every time I have got over the flair without the steroids..the last month I have started to have the raging fevers again though and I'm praying it's not leading to anything as I've had blisters on my lips also. I'm praying it will burn itself out ☺x

  • Wow you are have perseverance and grit. I'm nervous about coming off steroids because I continue to have symptoms and I want to continue working. I fear that I will go on disability. I'm praying for you.

  • Hi. You may want to speak with your practitioner about interferon alpha. I am currently in remission following use of this drug and haf many symptoms like yours. I do not specifically have neuro bd but have mainly neuro symptoms. I don't take steroids but take mycophenolate which zi took throughout treatment with interferon. Within about 2 weeks of taking it all of my symptoms were gone.

  • Hello Jaynep,

    As others have said there are many people who are in meds but still have symptoms. I am one of them. I have been on various meds with some doing better than others. Someone mentioned Dr. Desmond Kidd, a neurologist. I know his special areas of interest in his practice is Behçet's and headaches. I met him quite a few years ago when I was volunteering for ABDA, our Behçet's Association here in the US. I arranged for him to speak at one of our conferences in Boston. I found him to be very kind and I have read a lot of journal articles and other sources he has published. I was not a patient of his obviously but I do know he treats Behçet's . I think that drs focus far to much on labs when it comes to inflammation. I have had very obvious and severe inflammation (which was evidenced through biopsy) yet my ESR, C-reactive protein and other labs might look "fine". I do understand why they prefer not to switch meds . However as a BD patient for decades, I am looking to have a quality of life. If I am in bed feeling too ill, too fatigued to move, that's not good enough. I know it is very different in UK than it is here. I don't know if your doctors there are willing to treat fatigue with medication or if NHS would pay the high cost of meds used here or if they are available there. After having this disease for 40 yrs, I am pretty outspoken about quality of life.

    I understand we take strong meds.. I alays ask about risk of treatment but just as important, maybe more important is the risk of not taking the meds. If you are stable with neuro involvement, most drs don't want to change meds at risk of your neurological status. I have low B12, Vitamin D, Magnesium and do take supplements. My neurologist tested for that. It has helped a bit with fatigue. I have optic nerve atrophy and B12 has been helpful. I am sorry you are still having problems. I am now on Humira. I am fortunate that my insurance covers it 100%. It is $2000.00 per inj. Sorry, I used to know the exchange rate to £ when I traveled to UK often. I am guessing it might be more difficult to get on the biologics. I was quite surprised how easy it was for my rheumatologist to get (first Embrel/etanercept) and now Humira. I had been on most of the lesser expensive meds prior, that made it easier. Hang in there. I strongly believe that our mind plays a significant part as well. I try to remain positive and put my thoughts on positive things. Support from others is so important. I still have very down days. Mostly I have a lot of gratitude that I am alive. I try to remember I have some good days as well.

  • Thank you I will ask more questions because my rheumatologist doesn't specialise in it and I've not seen a doctor who does know much about it.thsnk you again and I wish you well x

  • Hope you can get answers. It is frustrating, I know! Keep us posted

  • The drugs ease symptoms but don't deal with the cause. I urge you to get a nutritionist that can help you with an auto immune paleo diet. Changed my life!!! xXx

  • Evidence base for the efficacy of the auto immune paleo diet? Can you supply references to research?

  • Hi Jaynep

    Great to see you are getting lots of support and super responses from the lovely people here. If you would like to email me., I can put you in touch with the Support Group in South Wales and also give you more details of the Behcet's Centres of Excellence. Wishing you well. Julie info@behcetsdisease.org.uk

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