Hey guys, was recently diagnosed with BD after 8 months of trouble. I am 27 and kind of nervous about the whole thing. I was kind of wondering what my like will be like from now on. What’s remission like? Is it common? Will I live a normal lifespan? You know typical questions for just finding out about this sort of thing. The internet is full of negative info so I am hoping to find some truths. I have had the mouth ulcers, ankle soars and lastly covered in blisters. I would really like to talk to someone who has had it a while.
Thanks,
DP
Written by
Miataman
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Hi and firstly welcome to the site. Life with BD is really what you make of it. It depends on many things...your symptoms, your meds and most importantly youself. I have suffered with BDfor 30 years and it took 12 years to get a diagnosis but it hasn't all been bad. The first years were really hard suffering with most of the symptoms without relief and nobody having any idea of what was wrong with me, then the next few years on many, many different meds and treatments until we found the best one for me. Then about 6 years remission and now much lighter flares than before.
I have still led a reasonable life balance with work, rest and flares.
Try to be strong, rest when needed and stay positive. Discuss meds with doctors but make your own decisions. I would advise you try the meds for at least a month as they all have side effects but once you find the best meds for you, ask yourself....which is better the side effects or the symptoms?
Hope this helps a little and I sure you will get many more replies.
Hi DP and welcome to the weird world of Behçet's! I am newly diagnosed too - January - but have had it pretty much all my life. I am 55 now but have had a VERY full life so far and intend to go on doing so for many years to come.
Over the years there have been times when I have been very fit, and have had few symptoms - the odd ulcer or two now and then, a bit of tummyache perhaps and some folliculitis but apart from that, no major problems. I would have ample energy and was able to combine lots of intense activity - cycling, scuba, overland travel in tough countries, hiking, dance - with the rigours of raising a large family and a challenging job. These 'remissions' have lasted for a couple of years at times, then I might have a flare for a month or two, then I would OK again for months or even years. This was what it was like during my 20s, 30 and early 40s. Over the past 10 years, though, I have been so unwell SOMETIMES I have been barely able to leave the house for several months, and have even relied on a wheelchair or mobility scooter to get out and about. I have stressed SOMETIMES because even now, these very poorly periods are the exception rather than the rule. Being undiagnosed, I never had any drugs to help limit these periods of intense flare.
My worst flares have all been triggered by periods of overwork, non-Behçet's illness (swine flu took me out in 2009) and emotional trauma, so now my goal is to try and stay as healthy and stress-free as possible.
I find that I bounce back much better if I am physically fit, so I try to eat right, sleep right and keep as active as the illness will allow. Certainly, rest is important during an inflammatory spell, but even when quite ill I try to combine rest with gentle activity, and up the activity levels as soon as I start getting better. It is quite a tightrope, as too much activity too soon can send me spiralling back down. This rest / activity balance is a difficult one to manage: the most important thing is to carefully listen to my body, and try not to let expectations (my own or other people's) push me into doing too much, or too little. I have been doing a full-time Fine Art degree for the past few years and managing study, art practice and deadlines around the illness has been an interesting challenge.
As Billi said, staying positive helps. When I am feeling really awful, I say to myself "I've got through this before, I can do it again, and this time I know more about it, so I can do it even better". Of course, there are frustrations and I certainly feel a lot better in my head if I can vent my anger and pain and sadness to people who understand - that is where forums like this are such a godsend.
You will also find a lot of great information here about ways and means people have found for alleviating the many and varied symptoms BD throws our way. If you type 'blisters' into the little search box up on the right, you may find others who have found a way to soothe them.
First things first. Don't be nervous. Flare up and remission a are a thing we are all coping with. I'm 32. I've lived with behcets my whole life but I've only been diagnosed on the last 5 years. Email me callingladyluck@gmail.com
You can ask me anything you need to and I'll answer you honestly, the good, the bad and the ugly! X
Hi Mrs B - a friendly word of caution - this is a public post which means anyone, anywhere can read your personal information. It's advisable not to share personal contact details - this can be done by private message.
To DP - you can make your posts viewable only to group members if you wish by selecting that option before you submit. Some members wont respond to public posts because of the nature of the content and it being viewable by anyone so you may get more responses if you make it private.
The choice is entirely up to the person posting of course, but sometimes members are not aware of this option and some of us 'olduns' pop on to point it out just in case.
Welcome. First thing try not to stress cuz that is a main trigger for behcets. I've battled for 30 years...misdiagnosed first 15. I've had pretty much every symptom and tried numerous meds. My best advice would be to start w ur diet.,.think about going gluten free and dairy free if possible...u want to eat as many antiinflammatory foods that u can. Do moderate exercise when ur up to it. And try and find a rheumatologist who is experienced w behcets. That is key yo ur success. Honestly I began symptoms when I was 30 and lived a pretty full life for 25 years...was in and out of remission but was a runner and triathlete for many years. I've really struggled last five years since it affected my cns but am actually seeking alternative treatment than just western medicine. Research and be open to alternatives...and always remember u r ur best advocate. U know ur body so fight for what u need to stay as healthy as u can. We r always here to help you. I hope u find relief and laughter and love
Thank you all for the replies. I feel very lucky to have caught it so soon. I bet it was hard to go a long time without answers. I feel a lot better after hearing from you guys. I know there will be bad days, and I will have to accept that but to hear that there are many good days in between is great. I have a very busy lifestyle and I don’t need BD slowing me down. I've only had two bad flare ups so far. My Dr has me on Cellcept and prednisone. So far that seems to be helping. I hate taking lots of pills but I guess I will have to weigh those vs the symptoms.
Regarding searching the internet - I strongly recommend you look only at sites where you can be sure the information is trustworthy and correct.
The site that this is the forum for has absolutely loads of brilliant information, including factsheets and medical papers written by BD experts who some of us are patients of. The fact that they recognise it as being 'official' is an indication that the information is correct and up to date.
By becoming a member you can ask questions of the medical panel, get advice about support groups, recommended specialists in your area, a carry card to keep your BD info handy - there's so much it's well worth a look if you haven't already. They also have a conference once a year which I thoroughly recommend. You can find out about this year's on the website.
Hi, welcome to this wonderful site! I was diagnosed at the age of 32, 38 years ago now! I was very ill for 7 years, then went into remission for 31 years! This is a strange disease, it affects us all so differently, but you've had great advice from other BD sufferers and so you know now that you can have a full, active life, ALL subject to how BD affects you and how your meds work and how you take care of yourself. I hope and pray that you will have many and long remissions and that your life will be full of joy, love, health and beauty. Focus on the good things in life and deal with your stress quickly if you can. Your thought life and 'self-talk' you know, that little voice inside? is very important, so try to replace toxic thoughts with positive ones. I read a fantastic book called "Who messed with my brain" by Dr. Caroline Leaf ( she is a Scientist) and it was really a great help in dealing with stress etc. Keep on keeping on!
Hey, I'm 27 too and recently diagnosed after 5 years of mis diagnosis of crohns. Not going to lie I have some bad days but my meds keeps me under control mainly and I live a relatively normal life. My boyfriend is amazing and totally understands, I work 9-5 5 days a week (don't have the bet sickness rate but my work understand) and still manage to go out with my friends & family...,tiredness can be tough but u will build your own coping mechanisms for each symptom it throws at u which can be a lot and all varied!!! I can't answer any questions unfortunately as I am still learning but there is light at the end of the tunnel! hope things calm down and they get u on the right meds soon. X
Thank you for sharing. I think you are right. In general people only post when there is a problem. With any illness it is easy to convince yourself of the worst. While reading through this and other forums I find that my symptoms are very lite in comparison to most of the other members. When all this started I got depressed and felt like I would live a very painful life filled with lots of doctor visits and a hardly bearable quality of life.
I now feel a little better about it. I am positive I will go broke from seeing my doctor. Though I am early in getting my meds I have seen her every two weeks since march. I figure that will taper off at some point.
Until I got this and even now I am very healthy. I was working out 5 days a week up until feb and have a super busy life style. 2 kids another on the way, adding on to my house for the 3rd kido doing to labor myself, 8 hour work day, part time in college. I'm busy..
Depression is something new to me and it is easy to get wrapped up in it when reading online about BD. There is a joke out there that WebMB can convince you that any cough or sneeze is a life threatening illness or leads to one. So reading has helped and hurt me.
I get erythema nodosum and mouth ulcers during flare ups and when not flared up I get little boils on my legs and arms that are less than a quarter inch in size. I had two breakouts before diagnosis which were 8 months apart. During that time I was on no medication to manage it. I still did everything I normally do. I sometimes was soar in the morning like arthritis and I had uvitius for a few days. The eye drops cleared it up overnight.
I started on 20mg prednisone and 2000mg cellcept. I am now on 10mg prednisone and still 2000mg cellcept. I have been on my meds for 5 weeks and my symptoms are slowly clearing up. I have one big ulcer left from the second flair up but it is going away. I have scaring from the erythema nodosum but it is going away. The boils are very lite and seem like they may be going away. Although I feel better it is easy to go back into that depression of when will my next flair be? How bad will it be? Will I have to stop working? Will this cost me the things I love? But I am starting to find strength from my friends.
Now my big issue are my meds. How safe are they? Will they have long term side effects? Will I ever be able to tone them down? My doctor won't tell me anything about my meds other than take them. She says cellcept takes time to work. I read that to be 4 months. But still 2000mg of something seems high. What do you guys think? What are you on? Maybe I am working myself up for nothing.
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