behcets syndrome and treatments

[cupples929]

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 ?

[Bridy]

Hi

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 in reply to Bridy]

thanks for your reply , good luck at Barts hospital .

[julietoo]

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

[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 .

[Hope_1]

Hello

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 in reply to Hope_1]

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

[Hidden]

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 in reply to Hidden]

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

[UKADMIN Partner Behcet's Syndrome Society]

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

[cupples929 in reply to UKADMIN]

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

[1962duff]

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 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 .