Help me! behcet syndrome with tuberculosis

[Hulusi]

Hello, I have had Behcet's disease for 10 years, which does not respond to treatment, and after treatment with infliximab and mycophenolate mofetil, I have perianal fistula, skin abscesses, severe heartburn, cystitis, prostatitis, night sweats, inguinal lymphadenopathy, and weight loss. ... I have become . Currently, my IGRA test is positive, but TB PCR tests are negative! Unfortunately, I live in Iran and most doctors do not start anti-tuberculosis treatment for me because tuberculosis is endemic in this region, and their opinion is that whenever the disease becomes severe, we start the treatment!!!! I suffer so much that I use narcotic painkillers. Please guide me.

Among the clinical symptoms of Behcet's disease, I had mouth sores and eye involvement, which has never seen active inflammation in examinations, and papulopustular lesions, and even my laboratory tests in terms of ESR, CRP, HLA, etc. have always been negative!!! Unfortunately, heartburn and bladder and pelvic pain are getting worse day by day and doctors in Iran call me every day. I have tried all the medical treatments for Behcet's disease such as: cyclosporine, cyclophosphamide, infliximab, adalimumab, colchicine, azathioprine, and methotrexate, and every time after taking these drugs, the heartburn worsens and I get perianal fistula. It is interesting that with the urinary symptoms that have occurred for about 2 years, no mouth sores have occurred. Currently, my clinical and laboratory symptoms: inguinal lymphadenopathy, hepatomegaly, night sweats, high LDH, ESR, negative CRP, high blood A.D.A, positive IGRA, negative PCR, and inflammatory lymphocytic infiltration in bladder, colon, and esophagus tissue samples.

[ZoeSwifty]

I’m sorry you are having such a hard time, it really sounds like you are in a lot of pain.

I’m in the UK and also suffer from Behcets and was diagnosed 6 years ago when all the symptoms I had been having individually over the decades all presented at once. Since then I have had 5 ops on a perianal fistula from an ulcer that had turned into an abscess. I then had perianal sepsis ( the first of three sepsis events) I am on steroids mycophenolate and vedolizumab. The last one just targets the inflammatory bowel disease symptoms and has been a game changer , I have more or less gained the 10kg I had lost ( I wasn’t overweight to start with so looked terrible!) and from the last mri I was told the fistula was the best it’s ever been. I think I have read somewhere it’s been good with fistula healing. I can’t have infliximab as I have a history of melanoma. I have an infusion every 6 weeks for the inflammatory bowel disease symptoms. I still have to be very careful about what I eat but before I couldn’t eat hardly anything. I am now intolerant to gluten and lactose, cant eat rich or spicy food anymore, and lots of fibre isn’t good either! Simple plain and anti inflammatory foods are fine. The vedolizumab is definitely cutting down on my hospital visits.

Apart from that Behcets caused uveitis, erythema nodosum, rashes, joint pain, fatigue headaches etc and mobility is much reduced due to all of the above.

I don’t know if you have tried vedolizumab and whether it would help you ? I also take triorasol mouth wash to stop the mouth ulcers which I find v effective. This is only accessible via one of the Behcets centres of excellence, I don’t know whether you would be able to access one of these?

I hope you find some answers soon.

Best wishes Zoe

[Hulusi in reply to ZoeSwifty]

vedolizumab I have not tried vedolizumab and I don't think this drug is available in Iran. But I have tried a similar drug. Unfortunately, that doesn't work either! But the thing about my disease is that after treatment with mycophenolate mofetil and azathioprine, I get anal abscess or fistula. I think this is a clue of the activation of urinary tract tuberculosis due to skin abscesses!!Unfortunately, doctors in Iran do not have the courage to try anti-tuberculosis treatment for me on a trial basis!!Unfortunately, they see that I'm suffering, but they don't pay attention to it, and they keep passing me around like a soccer ball to their colleagues and refer them to each other!!

[Hulusi in reply to Hulusi]

You mentioned the mouthwash, I haven't had a mouth sore in almost 2 years!! I bet this symptom indicates the inactivity of the disease in me and maybe its wrong diagnosis!!!

[rooser1]

the only thing that worked for me and gave me my life back was changing my diet. I did candida diet religiously for nine months. basically zero carbs. cutting sugar saved my life. i have made other in depth posts about this in my profile. click on me

[Icefire]

I like rooser above am using a low carb diet. I used a blood glucose monitor and discovered a small potato / rice/ pasta spikes my blood glucose high. Since keeping blood glucose lower my gut has settled and I now tolerate dairy and gluten. (Gluten in small amounts). I aim for minimally processed foods, lots of veg (but not root veg, too starchy), nuts, seeds, cheese, meat. Small amounts of fruit with protein/ fat after exercise.

Only started this in November but I feel way better. I get symptoms when I spike high too often.

See glucose goddess / Zoe / Levels for more info on blood sugar management.