Behcet's Syndrome Society
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I just want to be normal! I hate this...

I have had Behcet's since I was about 3 and I was only diagnosed 12 months ago. I am in my mid 30's. I am soooo fed up. I only found out what it is like to feel normal when on prednisolone Steriods. If I am not on sterioids I smoke cigarettes to stop my mouth ulcers. I am so fed up with hurting, headaches and trying medication that is pretty horrid! I have tried colchicine which was ok, but nothing spectacular happened. Azathioprine - death in a pill! Was ill with tonsilitis monthly and felt hideous. About to have a brain MRI and full eye assessment before I start Dapsone, I declined thalidomide.

Is there anyone who has felt well and how? I am at the end of my very weak and aching tether..... I keep getting tonsillitis too...

12 Replies
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Hi Stormie ( great name) especially with our illness. I liken BD to a book, twists and turns on every page!!!!

Sooooo sorry you are feeling so down and unwell just now. I am now 62 years young and have suffered for 26 years and only diagnosed after 12 years and you were so young to be going through this.

After about 16 years of many, many drugs I started on Colchicine. Although it has its side effects I stuck it out and eventually it became my best friend, in that I stayed on it for over 6 years, during which time I didn't have any ulcers or other BD related symptoms, nor for 3 years after stopping due to a stomach bleed. Also during the 26 years I had 2 more beautiful children and during pregnancy and whilst breast feeding for over a years each...no flareups.

Unfortunately over the last 6 months it seems to be coming back with avengeance...still compared to others I seem to have had a good ride.....probably because I can't remember how bad the first 12 years were( must be the mind going...ha ha). If it is the ulcers just now here a couple of tips I have come across over the years. Drinking coca cola seems to soothe mouth/ throat ulcers, . Clenil steroid sprays are good for nasal ulcers and Clenic inhaler for mouth, vaginal and anal regions. Best started at the very onset of a flareup use 3/4 puffs per cluster and upto 4/5 times daily gradually reducing as improvement shows. Sometimes stops a complete flareup.

Anyway this a great site for airing your probs, pains and jokes. Hope some of what I have written helps.

Hugs and smiles

Billix

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Thank you so much - I am in such a bad place right now. It seems to be worse since I actually found out what is wrong with me. I am considered a mild sufferer, I don't have any eye sores (do get HUGE floaters), I only get mouth ulcers albiet up to 15 in one go that last for weeks, coming and going without a break. I get headaches everyday and I ache all the time. My sympathy for anyone who has it moderte or badly. Like you during my pregnancies I seemed to be better, I can only assume this is beacuse the body naturally supresses the immune system. I hate taking drugs and I really don't want to admit I have this. How do you cope, I really am not right now xxxxxx

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Hi Stormie Hun,

I think you have picked an appropriate name for how you are feeling right now. You are very young to be going through these really traumatic things and with a young family to cope with as well you must be feeling very distraught at times. (well....most of the time as you describe well here) Having been sick right from the onset of your life really you probably have no idea what normal really is. I'm not sure any of us do really as it is very difficult to pin point when the BD started for most of us. I can look back on my full life time to being a child and having all sorts of weird and nasty illnesses that were never explained but once over, they were forgotten and never all linked together as part of one medical problem. I am nearly 55 now and have been officially diagnosed over 10 years having had a major loss of sight over 16 years ago now. It took several years for the BD diagnosis to be made.

I personally fought the idea of having BD for several years and lost a very lucrative career sudddenly which I mourned desperately and went to a very dark place indeed so it is easy for me to understand your frustrations and unwillingness to accept that you have a chronic medical condition. The problem is Hun, that the more angry and upset you get about it all backfires on you and actually makes the condition worse. Virtually everybody who has a chronic condition of any kind will tell you that you need to be kind to yourself when you feel unwell and take it as easy as you can. Fighting to keep going and trying to ignore the fact that you're sick only makes you feel worse.

Eventually everybody finds their own way of cpoing with BD and some manage to do it better than others. I am sure the more you read this site and get information and learn about the condition you will find it makes a lot of sense and you will be able to apply the knowledge you have gained to your advantage. Please try to get as much out of this forum as you can by reading and talking to the members. Not only will you start to feel that a problem shared with people who really understand what you are going through will make you feel better in yourself but you will find others who feel the same frustrations as you have now and perhaps you will be in the position of helping them. This can be very theraputic in itself and it all helps with living with this awfully cruel condition.

Stick at it hun and please try to be kind to yourself......you really deserve it ! :)

take care, ttfn big hugs xx

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You are so kind - thank you for replying.

Having spent the morning in tears I am ready to pick myself up and shake myself!

I know how fortunate I am in many aspects and it is about time I stopped feeling sorry for myself.

I feel so supported already by your replies.

There is hope and I just need to get my head around how I deal with it. I am thinking of starting acupuncture again, this was amazing and i was pretty much symptom free for the 2 years I had it.

I am terrified of all the drugs they offer.

You two ladies have already helped to change how I feel - I am very grateful.

Part of me is down beacuse I have been on steroids which are AMAING and for the first time in my life I felt normal - now I am off them I realise how bad I feel when I am not taking them.

Onwards and upwards - what meds have your tried?

Stormie

xx

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Crikey Hun....theres a list as long as your arm and of course, what works for one is absoloutely no guarantee it will work for the next poor soul in the line.

As a general rule of thumb I tend to keep as far away from steroids as I can. I am almost the size of a small house anyway so can well do without the extra pounds they inevitably make you stack on. I am also diabetic and that has a bearing on the types of drugs I get on with. I try not to recommend any individual drug as there are no absoloute guarantees with any of them. The only way I get into drugs is if say someone is having the nuerological pain with their feet and I might suggest they check with their GP about one of the epilectic drugs that a lot of us find we end up with to take care for the foot pains. Apart from that I don't personally like to state the names of drugs only the types of drugs used that I know of. Does that make sense hun? Maybe I'm a bit over cautious but I couldn't live with myself if I lead someone to believe that some drug or other was a bit of a wonder drug and it didn't work for them at all! LOL. Some people are much more willing to name their drugs on here so it is well worth reading the blogs and questions very regularly to see if anything fits into your particular picture.

Take care hun...glad you found us and can get something out of the forum as I have. I only started reading it about 8 weeks ago and already I have come out of my very reclusive lifestyle to join in with the friends I have made on here so I'm sure you will too. ttfn, big hugs xx

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What is normal? My normal probably isn’t the same as yours. My fishmonger’s normal probably isn’t the same as my dentist’s.

I don’t think you are feeling sorry for yourself at all. Although you have had this for many years, your diagnosis was only 12 months ago. Diagnosis can bring relief as at last you know what you are dealing with. It can also bring anger and frustration, fear, confusion and all sorts of other feelings. If there is anyone here who went straight from diagnosis to acceptance and has been on cloud nine ever since I would be very surprised.

It’s not all bad, but part of the process is allowing yourself to feel what you feel, taking things a step at a time. The psychological/emotional impact and implications of this disease are as important as the physical symptoms and there are lots of things you can do about that. You could see if there is a support group in your area, or another BD sufferer who you could meet for a coffee and chat, exchange emails or telephone calls. You can phone the Society helpline, which offers a listening service.

behcets.org.uk/menus/main.a...

You could consider counselling, which if you are in the UK may be available via your GP. I believe the Centres of Excellence offer a psychological service but I have not been to one and am not certain about this.

And of course you can post here anytime – there is usually someone around. Whether it’s a dark day, a high day or a holiday, the wealth of experience makes it a great place to be. There is a lot of positivity and humour as well as empathy, practical advice and shared experiences. :)

Finding the right treatment and management regime can take a while; not all meds suit or work for all patients, but once on a suitable regime, life can, and indeed for some does, become much better and easier. Remission does happen.

Regarding severity of illness, what matters is how it feels for you and how you cope with it, not what ‘degree’ others have. You and your symptoms are just as important as every other BD patient.

To answer some of your other questions - regarding the headaches – it sounds as if they are being investigated which is good. You might find these interesting:

behcetsuk.healthunlocked.co...

behcets.org.uk/menus/main.a...

and for the ulcers: behcets.org.uk/Documents/ul...

If you type ‘headaches’ or ‘ulcers’ into the search box in the top right corner of this page you will find previous discussions on these subjects

There is a thread on medication here: behcetsuk.healthunlocked.co...

Finding your normal may take a while, but you WILL find it and you will learn how to live with it on your terms. Take all the help and support that you can to help you on this journey.

Bear in mind that BD is part of you, it is not all of you.

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Hi again,

Glad the others on the site are helping to cheer and bring some insight to this disease. As I say we are all on our journey with this luggage ( bd) , just we all visit different places which we either stay a while to enjoy, or move on to the next. But together we can help each other and ouselves.

So, chin up, stay in touch and don' t give up the fight.

All the best

Billi

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Hi Stormie, I really feel for you as I had BD from childhood and wasn't diagnosed until I was 37, just made to feel like a hypochondriac (I am 49 now). However during all that time I managed to bring up 2 sons and it is very hard being around small children when you feel so rough. As everyone on here says different things work for different people and I too don't like taking medication so I can only tell you what has worked for me and hope that some part of it may be of help to you. First of all be kind to yourself, I always felt if only I tried harder I would work through the tiredness - it just made it worse! Secondly I have had a great deal of success with diet. Again different things work for different people but as headaches, ulcers (both ends), joint pains and fatigue are my main problems I found giving up caffeine (I was a big tea drinker) got rid of the headaches and the ulcers are not nearly as bad if I avoid fruit, peppermint, wine, spices and cut right down on the sugar. If I eat grapes or cherries (which I used to love) the ulcers literally start popping up in my mouth within the hour. My joints and fatigue are also not as bad if I stick with this. I really hope you find some help from all the advice on this site and wish you all the best. Linda x

PS. My sons made it to adulthood, not quite sure how the state I was in at times, but we got there in the end!

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Hi Stormie,

If you can stop smoking, then using nicotine patches offers the same anti-mouth ulcer benefit without all the toxic chemicals of smoking. Even Behcet's patients who've never smoked may benefit from using a daily low-dose nicotine patch to prevent ulcerations. I had to stop using them when my skin developed a sensitivity to the adhesive.

I found that Trental (pentoxifylline) worked much better for my ulcerations and arthritis than dapsone and caused fewer side effects. It's certainly something to ask your docs about, especially before you graduate up to biologics or immunosuppressants. Even if your G6PD test is normal, dapsone can still cause anemia which worsens your fatigue.

Methotrexate is another alternative before trying the stronger chemo drugs. Thalidomide can be very helpful for some people, but newer research shows that the peripheral neuropathy it sometimes causes can be irreversible, and that makes it risky.

It's not uncommon for people with chronic, disabling illnesses to take antidepressants to help them cope with the emotions and pain of their illnesses, even if they don't think they're depressed. I have been on full disability benefits for the past 14 years and haven't worked except a bit online. That can be especially depressing/discouraging (and can strain marriages and family), but you do adapt and develop a different view of life.

At least these days there's Google and Google Scholar where you can search for anything about symptoms, drugs, research, and support groups. You find out that you're not alone and that's there are many options out there that your doctors may not know about.

I've had Behcet's for 26 years and was fortunate to be diagnosed at age 28 after only one year of symptoms. Since then, I've had practically everything happen and have used almost every treatment out there (except scam "miracles"). Still, everyone's disease course is a bit different and their response to treatments vary quite a bit.

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Hi, Your symptoms sound all too familiar! I am on colchicine 3x a day and 100mg azathioprine along with amitriptyline which I was on 50mg but now on 75mg. I also take tramadol, loperomide, steroid pellets and sumptripan when needed. It took a while for aza to take effect, but I can honestly say once it took effect I felt 90% better, which was a real break through. Out of the blue I started getting horrendous mouth & genital ulcers and headaches that all I could do was sleep. Bloods show that white blood cell count is low and docs think it might be a virus that has triggered a flare. Tried to up colchicine but it made me sick and messed my tummy up big time. BD is so unpredictable. Keep your chin up as there is a meds combination out there that will suit you. Well thats what I tell myself anyway. C x

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Hi Stormie!

I'm glad you posted on this site! I posted a few weeks ago and found I finally didn't feel so alone in the world when people replied sharing their stories. I was diagnosed in 6th grade with BD, along with my two sisters, and thankfully after taking colchicine for a few years, BD basically went into remission. I'd feel extremely tired at times for weeks or months, and I had ulcers return in 2007 after going through years without them, but overall I was fine. My past year though has been full of symptoms. No ulcers, but headache, back aches, nausea and vomiting, sweating, fatigue... And I've gone through 5 doctors who all send me everywhere getting tests done and everything comes out normal, so the doctors just pass me off to the next one and dismiss my symptoms. It has been extremely frustrating that no one will address my Behcet's, even though I bring it up to each doctor and tell them it's that, and I got to the point where I felt like maybe it was all in my mind and I felt extremely alone. I'd have some people out here telling me that my symptoms aren't as bad as I think and dismissing them also. So it was a relief to come on this board and get the acknowledgment and advice the others have offered.

I don't have much advice to tell since I'm not on meds - the only one I tried was colchicine and it did a great job - except try to keep your stress levels down... I'm making big changes in my life (quitting my stressful job and moving closer to my family) to try to make myself happier and less stressed and so far some of my symptoms have subsided. Also I've tried to lessen my gluten intake and that seems to make me feel better overall..

I hope you feel better soon and that this site helps you out! Sending a hug! Good luck finding the right meds that will help you the most!

XOXO

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Not sure where you live. If it's in the UK there are active regional support groups and we have a brilliant daily active hidden FB group - just message me your FB name if you want to join in.

there are many good medicines but the key thing is you need a consultant experienced in behcet's or vasculitis of which there are many. Are you sure it is tonsilitis, not throat ulcers from a flare - I was often misdiagnosed with strep throat pre diagnosis and it was all behcet's.

Zebra

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