Starting Benepali

[Millie222]

Hi I have ankylosing spondylitis been diagnosed for around 5 years now and as it's progressing they have decided to put me on Benepali injections, would just like to hear from anyone who has this condition and on this treatment how they found it, many thanks x

[Runrig01]

Hi, I have ankylosing spondylitis and have been on benepali for 8yrs with a good result. I also need methotrexate as it affects all my peripheral joints and jaw as well. I have much less stiffness. I do still get pain, but I was late in getting my diagnosis, having had it for over 25yrs, so I had fused sacroiliac joints, as well as fused ribs at diagnosis. So I get a lot of muscle spasms, due to stiffening of tendons in those areas. If you’re fortunate to have no damage then you will hopefully get a better relief from pain. However I’m still in a better place than I would be without it. I get no side effects. I get less infections, because the biologic only turns the dial down on tnf cytokines, not the whole immune system. Before biologics my body missed infections sneaking in because it was too busy fighting the fire. Once on biologics, the fire was under control, and my body could focus on infections sneaking in. It’s definitely better to start them before damage occurs

[Seatgeorge in reply to Runrig01]

That was very Informative,I use benapali I think it's excellent very clever how it targets tnf and as you say turns the wick down.

[Red_Lillies]

I took Benepali for 7 weeks. Diarrhoea started after 7 days, increasing in severity until I was on the toilet 8 times a day, constantly thirsty, no longer passing stools at all, just murky water. Strange thing was not too much pain. Had to cease this treatment, which didn’t appear to be having any positive effect. Although rheumatology insisted it was too soon to tell. The diarrhoea was awful to cope with.

[medway-lady]

I have RA and Benapali is good, far more effective than Abatercept. But I found the pen nigh on impossible to use so changed to syringe delivery which is easy. Good luck and I hope it helps.