behcets syndrome and treatments : hi i have been... - Behçet's UK

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behcets syndrome and treatments

cupples929 profile image

hi i have been diagnosed with Behcets syndrome for around 3 years , recently i have had to give up work after 28 years it has just become so difficult to live with my condition . I had been on different drugs but most recently i was taking weekly methotrexate injections and 6 weekly infusion at hospital off Remicade while having my bloods tested every two weeks .Around eight weeks ago i was taken off all medication after irregular blood results with my liver funtion .Has anyone had any side effects while using any off these drugs ? Also has any other sufferer had any success in applying for P.I.P ?

12 Replies


I to was diagnosed with Bechets and was taking meds regular but I to had problems with my liver function it made me quite poorly my liver enzymes where highly elevated was told yesterday that I need to be referred to Barts hospital London as I require specialist treatment Barts is one of there Bechets centre of excellence like you Doint know if I will get pip as I to had to give up work x

cupples929 profile image
cupples929 in reply to Bridy

thanks for your reply , good luck at Barts hospital .

Hi, have you tried low dose naltrexone? It's doing good things for me, and has fewer side effects than the other alternatives...

cupples929 profile image
cupples929 in reply to julietoo

thank you for the reply , i have not tried that naltrexone , i will mention it to my specialist doctor at next appointment .


I developed drug-induced hepatitis from Remicade and had to stop all medications while my liver recovered.

My liver is back to normal and I have not had further problems even though I am back on a mix of medications.

Best wishes

cupples929 profile image
cupples929 in reply to Hope_1

Thank you for your reply , hope everything is kept under control for you .

Hi hun sorry to hear about ýou getting all this bad news, I have had behcet's for about 13 years now and been on this that and the other for years, I am partly sighted now and cud loose my eye sight, plus I have fibro and suffer with bad depresson plus a few other illnesses, I have been on dla for years then out the blue they took it of me so help from a friend and c.a.b took nearly a year but won my case had to go court 2mins it took em to say I won and will now be getting pip a review in couple of years though, good look with everything hun x

cupples929 profile image
cupples929 in reply to

Thanks for your reply sorry for my delay in getting back to you glad you won your appeal and hope things improve

UKADMIN profile image

Hi cupples929, This website has some very useful info about applying for PIP: We have heard of some success stories, but not good stories about the whole process. Good luck.

cupples929 profile image
cupples929 in reply to UKADMIN

Thank you for the reply and the information hope you keep well

Hi I was wondering how the medication has worked out now for you. I was on methotrexate and it caused my liver function level to go up far too high, I was taken off it and all drugs for 6 weeks . I was put back on methotrexate at a very small dose and after 2 weeks my liver function was even higher than the first time and I now have inflammation in my pancreas.

cupples929 profile image
cupples929 in reply to 1962duff

When I was taken off the methotrexate I was never put back on it . I am taking Mycophenolate Mofetil 500mg x 2 daily and a six weekly infusion off Remicade , seems to agree with me and , fingers crossed , its keeping ulcerations at bay .

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