Behcet's Syndrome Society
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Humira

Hi. I am 29 yrs old and have suffered with Behcets for 11 yrs. I've had a heart attack, a couple of mini strokes. I have chronic unbearable pain which is controlled through Morphine and anti-epileptics. I'm on a bunch of meds including steroids (40mg) and injections of heparin. I have vasculitis in my nervous system too causing loads of weird sensations, fits and brain problems. I have arthritis, skin problems and bowel problems. I've just finished Infliximab infusions and now am starting on Humira (Adalimumab). Has anyone else tried this?

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Hello,

I think a few of us have tried or are currently on Humira. I went from Infliximab to Humira but am not on it now.

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Did it work? I so want to get off the steroids but I also need to have a life (which I only get by taking the pred). Hoping this will be the answer:-)

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It helped with joint pain level and digestive problems for the short time I was on it.

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Did they stop it or you? I believe this is supposed to be a longer term alternative. I am basically out of options now as far as I know!

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It was a mutual decision. Quite simply I didn't like the injections and neither did my skin.

There are so very many options when it comes to medication, sometimes it's a case of trying out different combinations - it may be that something that doesn't seem to have helped you before could help in conjunction with something else.

Have you had a thorough medication, managagement and lifestyle review recently?

I've been back and forth with various combinations and sometimes things that didn't work previously have been helpful at other times.

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Hello there, I had Humira for about a couple of years, but found after a while it wasn't working, so I am now on Infliximab.

Everyone is different. I hope it works for you.

Best wishes xxx

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That's interesting, I did it the other way round! It seems some meds become less effective over time, but I've recently re-started Colchicine after a break of several years and it's helping a bit.

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I think I've had all the Infliximab they're going to give me. I've tried all the usual things: steroids, colchine, aza, methotrexate and now Infliximab. The only things that have really worked are the steroids and pain relief (Morphine and pregabalin). I'm having an MRI next week too to rule out a pituitary tumour and check why I'm fitting. Hope something works soon x

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