Do 'mild' symptoms inevitably get worse?

Hi I am waiting for a diagnosis but I am quite convinced that it is Behchets. I am aware that my symptoms seem to be a lot milder than a lot of people that post on here. Did you all start off with symptoms like mouth and genital ulcers and then develop the other stuff over time? How quickly did it get worse? Does it always get worse?! Thanks.

10 Replies

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  • Hi Bocksey. The short answer is no, it does not always get worse but it can. I am not a medical professional, just an obsessive researcher. I found it very helpful asking that same question to my rheumatologist, and again to an opthalmologist. They can best help you out regarding your prognosis.

  • no. mine are mostly mild. controlling the ulcers is key to controlling flare ups for me.

  • No, not for me anyways. I have been diagnosed 4yrs now and its very unpredictable still. Sometimes i think i am going to get a massive flare up - ulcers, arthritis, headache etc then sometimes it will disapear within days. Other times i get virtually no warning signs, literally wake up and i'm struggling for weeks it seems.

    Its very unpredictable, so annoying!

  • I agree with short answer of NO.

    Long answer- if you're having mild symptoms, they can stay mild or they can progress to WTF depending on your triggers. So key answer is: WHAT ARE YOUR TRIGGERS THAT ARE CAUSING THE MILD SYMPTOMS?

    For everyone- it's stress. Lack of sleep, overdoing it. IMO, I also think its diet. There are people on here very aware of what is in their diet and have little to no BD symptoms, and there are those who "dont eat that bad.... or have a bit of a 'sweet tooth.' " Me, personally, I have cycled through hell, and have had years of what seemed to be an agonizing "mild." Fatigue, all the joint pain, constant mouth ulcers. Overall, a shell of a person. Couldn't think of a time where I didnt have oral ulcers. I thought that was my normal. As for my WTF- i get the meningitis. I get thrush. I get the downstairs bits. The cripplings hand/wrist/ ankle arthritis. The red skin bumps (EN).

    Then, I changed my diet.

    I am in the best shape, have more energy than ever. Here's the NOT SO SECRET. Cut all sugar. That's it. Meat, veggies, fats. Sure add fruit if you can tolerate it. I can not. If I eat anything with sugar, I get ulcers by that night. I messed up and drank a sweet wine instead of my dry-BOOM- over 16 ulcers the next day. Joint pain. Had kidney issues into the week-aka I was peeing out pieces of tissue, RBC and WBC (I got medical sticks and widgets to stay on top).

    Every time I get super mild issues, an ulcer here or if im feeling a little stiff- I assess myself so that way I dont go from MILD to WTF HOLY HELL. Shit can happen within hours and days. It's usually due to a lack of sleep or there is some bullshit situation that is really weighing me down. SO- I make sure I get to bed early, at least 8 hours of sleep. And as for that nagging situation or person? Come to terms with it. Clearly it's affecting my health so it needs to f*cking go. Put yourself first.

    I make sure I eat plenty of Omega 3's like salmon, and anti inflammatory herbs like rosemary, garlic, and oregano. Eat brocolli. Eat spinach. Eat coconut. Within that week, back to 100% usually.

    TL;DR mild does not magically go to THE WORST. But it can if you dont figure out what is causing the mild to begin with.

  • More garlic? Done and done!

  • No great pearls of wisdom to add to the replies already posted except to say it really does change day to day or sometimes week to week if you're unlucky. I've just started treatment with Humira so will let the forum know how that goes. Week 4 atm and no change in symptoms.

  • Thanks for your replies. I really haven't a clue what my trigger is. I have mouth ulcers ALL the time and have done for as far back as I can remember. The genital ulcers started in November when I had pneumonia. They have been pretty constant since May. I am writing down every little symptom for the next 2 months until my appointment in December... Guess I should write down what I eat and drink too!!

  • Hey! I got diagnosed earlier this year, and like you just had mouth ulsers then genital ulsers. My Bechets is very mild, and stress and tiredness is definitely the trigger, I have a flare up roughly 9months apart, but after changing jobs, giving myself more time and eating healthier I feel like I don't have it! Changing my toothpaste was also a huge one! Just switching to one with no SLS in it meant I went from having mouth ulsers everyday to now having one every couple of weeks to a month! So check the products you are using!! Also it's better for the environment! 🤓😋 good luck with it!

  • Someone mentioned about changing toothpaste because of the SLS' in it. I am going to give it a go - thanks for the reminder and I will update on how I went with it (might be useful for others too!).

  • Yes and no. For some people with certain manifestations, we know that even a remission won’t stop the issues we accrued during a flare. Neurologically we didn’t know what type I have in Behcet’s lingo, and frustratingly we still don’t know. For many patients they live knowing each neuro attack is going to add onto preexisting issues. For me I never know if the neurological symptoms are normal things healthy people deal with, or a new worrying flare.

    Everyone who has Behcet’s is hit differently, with the main focus being age of onset, and type of symptoms, but even that doesn’t map it out well. I had extensive symptoms as a child but nobody looked into it. This would explain how my symptoms got worse earlier age wise than most, but my experience with lupus in the family had me on meds quickly. We eventually realIed I had Behcet’s (8 years of testing later) but I was lucky to be on immune suppressing drugs during that whole period, which likely lessened symptoms. That fun aside, I have both GI and neurological manifestations, so I’m in that oh so fun small group with limited medication options. Rumor has it symptoms decrease with age. I’m 31, and would really love some idea of what it feels like to not feel gross!

    Best advice? Plan for the bad days so you can enjoy as many of the good ones. Not happy I’m getting a wheelchair but it means I can go to more festivals, I’ve missed them, and if we get my nausea and bleeding under control, I can get back to working, too. Use medicines and medical devices to take back the parts of your life that you value :)

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