New and curious

[Alicia92]

I've just been diagnosed with BD just wanting to know if anyone has taken the all natural route and had good results? I really don't like to be on prescription drugs and would prefer a natural remedy

[sassyscript]

Unfortunately I tried going off all drugs doing the natural thing and I ended up in a big relapse. Please ask your doctor first (in person).

[rooser1]

I am on the natural ish route now. When I was initially diagnosed and months before that- I was on a ton of medicines 15 to be exact. I used to get thrush a lot and the last time I had it- it was a blessing in disguise. The pharms stopped working, I was on clotrimazole, fluconazole, an oral probiotic and nystatin at one point (ha ha that’s worthless) so I did the candida diet. It’s essentially sugar free and carb free. Initially really frustrating, and I had no idea what to eat. On day ten, I felt amazing. I had energy. I hadn’t had stomach problems. I hadn’t farted in what would have been two weeks(trust me it was like whattttt). So that in itself made me analyze what can I do on a controlled level to help heal me. It was weird bc here I am, a fucking scientist- specializing in phamaceuticals- and here I am gonna go down the hippy dippy homeopathic route. And guess what- I think there’s a blend of both worlds. Some things need an actual pill. But there is not a magic pill for everything. Blend and use everything in moderation.

As of today, I am on one half dose of colcrys which I plan to be off of next year- as my diet (sugar free and low carb) has proven to keep ulcers and joint inflammation at bay amongst so many other bullshit things.) I just stopped my oral contraceptive of 13 years a few weeks ago- that in itself- was a deceptive white noise that I shouldn’t have ignored. I’m loving my body now. I am now very in tune with the slightest sensations and can combat problems Before they become bigger problems. I use essential oils for minor skin issues. I eat a diet rich in anti inflammatory herbs like oregano and rosemary. Lots of omega three foods like nuts and salmon. Funny thing is when my joints do act up- usually from lack of proper sleep or stress, I’ll crave raw salmon. Lol your body knows what it needs! Listen to it! Drink water. Sleep. Cut bullshit. Eat well.

So through all that rambling- I found the natural path after. Diet is really important. Sugar is the fucking devil.

[2106 in reply to rooser1]

You are so right. Listen to your body it know what it is doing. If you put in lots of chemicals they have to come out in some shape or form. Very true saying what goes in has to come out.

[Hidden]

Hi,

There is no evidence to support any “natural “ treatments for Behcets unfortunately.

It’s a form of Vasculitis which literally means inflamation of the lining of the blood vessels, Behcets can affect any size from capillaries to the aorta. As it’s a spectrum disease much depends on how it affects the individual, oral and genital ulcers whilst painful and unpleasant aren’t life or organ threatening, neurological, eye or artery involvement is.

No medication comes without risks and each individual will have a very personal take on risk V benefit. The best advice I can give you is educate yourself about Behcets before making a decision about treatment and make sure you understand the degree to which you are affected. I am on an anti TNF as well as Methotrexate, they have given me a good quality of life and have they halted the progression of a thoracic aortic aneurysm.

When it comes to “natural “remedies I would be aware of the placebo effect and the pitfalls of accepting what others say who may not have the same symptoms as you plus are unable to scientifically back up their claims.

[RonSton7]

Its a big decision to make if you are already prescribed medication for BD. And not a decision you should make on your own, if you are considering this speak to your doctor or specialist first as you probably need an increased amount of monitoring initially.

For me the benefit vs risks of being long term on various drugs just wasn't worth it so i decided with my rheumatologists guidance to come off immunosupressants - i was on a hefty dose of azathioprine, after a couple years on prednisolone. I kept getting infections and felt permanently run down. I had also developed severe allergic reactions to various drugs and after a few trips to intensive care for anaphylaxis i really didn't want to try any other new meds.

I now have managed a 18 months with only occasional short courses of pred like a weeks worth at a time if things are bad. I've found higher intake of omega 3's, garlic and just eating cleaner to be helpful. Getting sufficient rest and trying to identify symptoms of a flare up early have also been key.

For me its working, but with BD being so unpredictable i know that if things deteroriate i'll need to consider long term medication, but for now i am managing and i feel better than i did on all the drugs.

I'd say to learn to listen to your body and make an honest decision on the risks and benefit of any treatment. Don't just write off any medication just because you'd rather not take it though, as most BD patients will need to take something at times. And if you do decide to go a natural route, then you need to work hard at being as healthy as you can.