I’ve had BD for years diagnosed early 20’s now 38, I’ve had 3-4 major flares, attacking liver, lungs, gastrointestinal tract and all the usual places, joints, skin. I haven’t been flare free the rest of the time, usually flaring 6 times a year for 2-3 weeks, ulcers, skin, joints extreme fatigue. Especially when seasons change.
Last year after a seasonal flare in the summer with usual symptoms I’ve learned to really push through, I found I couldn’t push through it, despite 10 mgs of prednisone. It just got worse and worse. I became almost psychotic, wandering, staring into space, struggling to walk. It attacked my nerves and my brain turned to mush, speech, memory, personality changes, urine retention and inconsistence, no feeling to deficate or move faeces through. I’m still not recovered, feeling hasn’t returned fully. If I get slightly tired it all the symptoms return, despite being on 25-30mgs of prednisone, I’m knackered all the time. It’s almost a year now and no signs of it abating, I’m just wondering how long this will last? I’ve had so much time off work. I just don’t function anymore. I’m waiting for treatment, but the hospitals just push me between one another. Steroids take the edge off but they aren’t a cure.
How long do people’s flares last?
Is it just I’m older and don’t recover?
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TomTomC
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Sorry to hear you've had such a rough time! Is your rheumatologist trying different treatments to see if something else can help - biologics etc? In terms of flares, I've had a couple that lasted 3 months or so and others that were over in weeks. I do think getting older has some effect on recovery rates! Good luck.
Thanks for replying, I’m just being passed from hospital to hospital, referred to specialist hospital in January, haven’t had an appointment till July. Usual hospital says they aren’t funded to give me biologics. The Neurologist said I needed a plasma exchange/TNF at the end of March and referred me to CofE. The steroids just don’t seem to be helping anymore. Just taking the edge off, but I’m not at a level I can function in any part of my life. Despite, my best intentions. I keep expecting it to get better, but it doesn’t. I’m loosing myself, which I’ve never done before despite my previous serious flares. This time it just seems the NHS isn’t there!
I have had a similar struggle in terms of feeling nobody is bothered about my physical health (constant struggle to be taken seriously and treated promptly!) and my mental wellbeing. I am anxious for the future, I am being harassed about sickness absence at work, I can't do any of the hobbies I loved and my social life is non existent. Having said that, there are always new treatments being developed, my GP is trying very hard to help me and I refuse to let this bloody condition take any more from me without a fight! Keep your chin up and remember you are not alone!
It just seems the care is so much worse than it used to be. You just knock on doors and no one answers. My GP too is constantly contacting the hospital as he is concerned about my wellbeing and the deficits becoming permanent, but all he can do is increase the prednisone. I live 15 mins in a cab from the london Behcet’s C of E and still can’t seem to get access to timely treatment.
Hi when I had problems like yours, I didn’t get back to how I was before but I slowly over the course of several years got back some independence and learned to live with the residual deficits. The good thing is that with a diagnosis you may get access to the newest drugs which will aid your recovery.
Yes I know what you mean. It will eventually get under control and you will be left to rehabilitate. It is a long road back but you may be much better off than I was on account of access to the latest meds. Keeping my fingers crossed that you get them soon x
Flares last any where from a few days, to a few weeks. My longest was 5 months. I think its important to note that once you flare- you have to RECOVER. They both suck. It is also important to note, to recognize early flare signs so that you can rest quickly and avoid a much worse flare. For me, its ankle and wrist aches and the erythema nodusom (I call them my red dots).
After my longest flare, it took me a year and half to get to a half normal. more bad days then good. 2 steps forward, always 3 back. I would have a good day followed by incapacity. Its tough on the mentality. I get it. 67 years old trapped in a 25 year olds body. Please believe, I get it.
it. takes. time.
I am now 6 years out from that flare (31 now so we about samesies), and just started to live my life as I think it should be last year. Had more set backs from Dec 2018 up until May 2019.
What I can say that helps me the most with recovery and healing is:
Getting all the sleep. I will sleep usually 10-12 hours no problem. DO IT.
Drinking all the water. And only water. aim for 100-150 oz a day (~2000mL).
Cutting all sugar and processed foods. this is actually really important. Think: Meat/fish, fat, veggies. doing these seriously three simple things, you will notice a difference in 10 days.
I say 10 days, because I remember how I felt on day 10 when i used the above as a "last resort." it was literally the beginning of my healing process.
Thanks that’s really helpful, are you on any medications, I sadly can’t really sleep due to the high doses of steroids. Yes just like you my ankles and wrists and fingers all swell and symmetrical erythema nodusom on both legs. The joints literally balloon. However, this has been pretty constant since last March with neurological damage thrown in for good measure. X
I used to be on about 15 different ones. Prophylactics, antibiotics, anti inflammatories (Nsaids) anti fungals- supplements out the wazoo. You name it. A whole plate of pills in the AM. never prednisone though. I was offered it too late with genital ulcers...like the worse was already happening so what was the point?
I get meningitis with my flares as well...ranging from stiff neck to can barely walk with sensations of hammers on every inch of skin.
I just try to sleep through my flares and fuel my body right.
I am currently not on any medication. I was able to wean off my meds over the last 5 years. The majority in the first 2-3 years after that flare. It was seriously the diet. I did the candida diet, its basically a stricter Ketogenic diet because there is no Dairy. And im not kidding. Day 10. Ill never forget that moment. I felt different.
Have you had your b12 tested? I was deficient for years apparently and then came to a head this past Jan, was having crazy neuro issues. electrical shooting pains though out my body constantly, memory gone. inability to recognize speech. Balance gone. Emotional lability. like complete NUTS.
if you cant get tested, please start a sub lingual of methylcobalamin daily. GAME. CHANGER.
Hi I've had bd for years my flare ups can last for a few months at a time I've had ulcers no for 3continous months it's a bit of a pain but all I can say is enjoy the good spells when you have them I'm on loads of meds ie coloccine infleximab infusion steroids for several years currently been put on special lozenges for my ulcers along with a special mix of antibiotics and more steroids and Nystatin have you tried any of theese
Hello mate, sorry to hear if the bad times you’re going through. I am also of the same age and was diagnosed 4 years ago. I went through the same as you but I found the best form of medication was to keep active and erased stress from my life.
I have now been going to the gym 4 times a week and also I changed my job. Although at the beginning it was tough it seems to have helped and I haven’t had a flare up in 18months and have managed to reduce my medication from 40mg down to 10mg of predisalone. I also don’t drink alcohol(only on a rare occasion) bit all these seem to have helped.
Hope you manage to find a way back to the good times. Keep battling on
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