Does this awful disease ever get better!!

[Roxybaby]

Hi everyone, can you please tell me does this awful disease ever get any better as I'm feeling pretty lousy right now and can not get my head around this diagnosis.

Thank you in advance for any replies.

[billi]

HI JUST FOUND THIS SITE. IN ANSWER TO YOUR QUESTION, IT NEVER GOES AWAY BUT YOU DO GET REMISSIONS. I HAVE HAD THIS DISEASE FOR 26 YEARS AND WAS DIAGNOSED AFTER 12 YEARS. I AM ONE OF THE LUCKY ONES AS ALTHOUGH I GET BAD ATTACKS AT TIMES I ALSO HAVE REMISSIONS FROM BETWEEN 6 MONTHS TO 2 YEARS, AND IT HAS NOT DAMAGED AS MUCH AS WOULD BE EXPECTED AFTER THIS LENGTH OF TIME. IF YOU NEED TO TALK OR HAVE ANY QUESTIONS, I'M HAPPY TO HELP IF I CAN OR JUST LEND AN EAR.

BILLI

[Hidden]

Hi, I think this is a two pronged question -

1. Does the disease ever get better and

2. will you ever feel better.

My answer to 1 - We know there is no cure, but that doesn't mean there never will be. Reseach into the disease and its treatment is ongoing. As per Billi's post, it can go into remission, for some people for many years. For others, a few symptoms pop up now and then - like ulcers or a period of joint pain, but overall they are much better than when they were in full flare. Not everyone gets the same symptoms or to the same degree.

It is possible for some to live a normal life with BD as long as it is managed well.

Fatigue is a big issue for most sufferers and managing that can help a lot.

2. You 'cannot get your head round the diagnosis,' which is why I split the question into two. It's a heck of a lot to come to terms with. So much unknown; fear, worry, pain - all of which will take time to sort out. Getting the right medication to suit you can take a while and sometimes it's a bit of a tough journey to find it. Management is also a key factor.

BD can have an emotional and psychological impact on the patient and everyone in their lives and this needs to be considered as much as the physical symptoms.

However, it's not a life sentence. It's a stinker of a disease that has come to live with you uninvited. You can do a lot to make it live with you on your terms as you adapt to your situation.

Advice and support is available on the main website, via your Specialists, if you are in the UK a Centre of Excellence is a good place to go, and you will find loads of support right here - from people who feel like you do right now, others who have been there and done that, some who have done it before and find themselves there again, others who are in a good place and managing well.

This is a good place to be, keep posting.

Please note this is a personal and non-medical opinion.

[Roxybaby]

Hi thank you to both of you. It's been a tough time since sept but am very lucky to have the support of my wonderful husband and adorable daughter, also my work are very supportive too as I work for a gp practice. I am under the professor at hammermith and have a fantastic rheumatologist. Unfortunately have been on two different types of immune suppressants with bad side effects on both so now waiting for the 3rd ones.

It's true that the fatigue is a major problem as well as the headaches and damn ulcers, god the list goes on lol.

I am so glad to have found a place where people can actually understand how I feel. I keep preying that it's going to go away but no such luck, just gets worse as time goes on.

Once again thank you.

[billi]

HI IT ALWAYS FEELS BETTER TO TALK. ON THE OFF CHANCE, WERE YOU AT HAMMERSMITH ABOUT A MONTH AGO AND WE SPOKE BRIEFLY BUT THEN WERE CALLED FOR OUR APPOINTMENTS. I MENTIONED THAT THERE WERE FOUR OF US ATTENDING AND ALL WITH BEHCETS???

SEASONS GREETINGS AND CHIN UP!!!!!

BILLI

[Roxybaby]

Hi, no I was there back in September and back again in January.

Seasons greetings to you too and thank you.

[Hidden]

Hi Roxy

I got really sick right around September too and was diagnosed just this past October. I've been exactly where you are now, not too long ago. Curled up on the couch, exhausted and in pain, ulcers attacking me, trying to wrap my head around the fact that "Oh my God, this is my life from now on". It can be very disheartening at first. So I completely sympathize with what you're going through.

Since then I've made some major lifestyle changes and have seen some results. I have had some good days and even short spans of time where I could eat without pain! The bad days certainly make you appreciate the good ones and all the little things.

As the others above have stated remission is possible. Hang in there. It WILL get better

Kat

[Hidden]

Hi Roxy,

I have only been diagnosed this year after going round and round the houses at the hospital getting nowhere. Back in June this year I finally got a diagnosis and put on Colchicine. The Colchicine helped reduce the severity of ulcers but didn't have any impact on frequency. In October after an emergency appt with my Consultant at the Nuffield Orthopedic Centre in Oxford I was put on Azathioprine and I am happy to say it is working for me. No ulcers in 3 weeks now and headaches are few and far between.

Hopefully you will find a drug that works for you soon.

Welcome to this site, it is brilliant and everyone is so supportive. Clare x x

[Roxybaby]

Thank you to everyone who has replied. Just waiting to go on my next lot of immune suppressants, hopefully in jan when I see the professor. I am so hoping that something works to get rid of the headaches as they are driving me insane, doesn't help much that I work in the medical profession and am extremely stressed at work at the moment.

Kat can you tell me please what life style changes did you make that has improved your bd?

Thanks

Tracey

[Hidden]

It feels like I've had this nasty diesae all my life 10 years but not sure give or take couple of yars. But not only have I got behcet's disease but also fibromalyia. Why me but why not. But for me 24/7 in pain a friend said to me loose your eye sight or the 24/7 pain from behcet's and fibromalyia. Defo loose my eye sight least I won't be in pain. Sorry but just being honest I'm not gonna lie but everyone is different hun x