Recently diagnosed

[Helen181275]

Hi, I am just recently diagnosed with behcets and looking for help/advice? I started with all symptoms but my eye sight was worse affected, they are struggling to get this under control. I'm still on high steroid doses, tablets and eye drops. They are hoping to start me on Azathioprine when they can get my steroid levels low enough. I'm worried my sight may be permanently affected and I drive for a living. What experience has anyone had with benefit help

[magician]

Very sorry to hear of your illness. At least, you have the diagnosis. The correct treatment will now be more reachable.

I had BD symptoms since childhood, but got diagnosed only after I had serious uveitis, during which my left eye was almost totally without sight, the right eye much bette but also affected. That was in 2007, when I was 48.

My treatment route was very much like yours - steroids, followed by aza and colchicine. Aza was dropped for a while, then uveitis flared anew!

At this renewed flare, aza was reintroduced, then subsequently replaced by Humira.

The good news: My eyesight recovered - not perfect, but better than I dared hope for.

Best of luck with your treatment!

[debs1963]

Hi I was diagnosed 15 years ago. my eye sight was hit to. I was on steroids for years and now I have sight in my right eye only. Dont give up hope as they are amazing drs and I'm sure they will help you. Take care. Debra x

[rooser1]

Hey there. It’s a lot to take in but recovery is possible! It is slow. So please be patient.

What helped me the best was a complete overhaul of my diet. I cut all sugars, including fruits (initially) and are Whole Foods (non processed).

Think meat/fish. A healthy fat. Any vegetable except corn. I would include some potatoes and rice from time to time but not in the beginning.

Drink all the water. Only water. Increase how much you drink. Aim for 100oz a day at least.

Get all the sleep. Sometimes you need 12 hours. Hell 15. Listen to your body. When we sleep, we heal.

I used to be on all the meds and an immunosuppressant. The diet overhaul is what helped me best. I am no longer on any medications and doing pretty well. Took about 2-3 years after my worst flare.

Look into anti inflammatory diets. Big help there. Also into a vit d and b12 supplement as well as a good probiotic. I have ones that i use and they are on the less expensive side and I swear by them.

Be kind to yourself. Realize you’re not alone. There is a light at the end of the tunnel.

It’s one day at a time.

[Willowmina]

Guys. The Plant Paradox diet is life changing for Behcets. It has changed my life and eliminated achey joints, scalp inflammation, rosacea and gynae issues!

[SCMW]

Hi, I’ve only been diagnosed two years or so, I felt incredibly ill at that point and wondered how I would hold my job down. What I can say is that when they start you on treatment you will notice the difference. My eyes are not affected at the moment but I’m on colchicine and recommended for azathioprine. Hopefully when you are settled on a meds regime you will feel more like work is manageable. You might want to investigate the access to work scheme as they can help with keeping us in work. I found it quite helpful and employers are required to help with reasonable adjustments. Other than that Behcets U.K. have a helpful employment booklet and info on benefits. Best wishes