Humira: Hi. I am 29 yrs old and have suffered... - Behçet's UK

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Humira

homeschoolmama profile image
8 Replies

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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homeschoolmama
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8 Replies

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.

homeschoolmama profile image
homeschoolmama

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:-)

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

homeschoolmama profile image
homeschoolmama

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!

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.

SuenMike profile image
SuenMike

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

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.

homeschoolmama profile image
homeschoolmama

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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