Benepali injections / ankylosing spondylitis

[Redisluck]

Hi

I’m new to this forum. I’ve been on Benepali for about 3 years,I do still find it painful when administering but I now numb with an ice cube and find that REALLY helps with the pain..certainly when it first goes in! I do suffer with ankylosing spondylitis,I do find the Benepali does help - there are draw backs like needing a wee more often being more careful in the sun but I do find it a good drug - am I the only one & should I be careful rather than just merrily use it every week m,not realising the risks?

X

[crashdoll]

Hello and welcome. I think some people do have a tendency to be casual and not realise the impact of some of the meds. I am definitely like this and often end up burnt to a crisp without realising and without being in the sun much.

I think, we do need to know the very important things though (and I’m sure you do) like what to do when you have signs of infection or come into contact with someone with chicken pox.

I hope you find NRAS HU as helpful as I do, it’s a supportive place to be.

[Redisluck in reply to crashdoll]

Oh I didn’t know what happens when come into contact with chicken pox? What can happen eek? And apart from normal signs of infection...is there anything else to be aware of🤭🤭x thanks so much for your reply❤️

[Redisluck]

Well it’s a funny thing isn’t it? I found without I just felt like I was constantly flu like., then gradually went away! Then few times when I’ve had bad cold I’ve not used the injections & felt like I was flu like again!! But sometimes I’m just not sure really?! Still get aches/pains but feel like this is normal now xx

[Runrig01]

I’ve used benepali for 2.5yr for AS. It has worked well for me, although not as effective as when I first went on it, and certainly not as bad as I feel when I miss doses.

It has given me some quality of life back, so I don’t stress to much re side effects. I am able to tolerate the sun as long as I’m wearing sunscreen. My fatigue is not too bad. I think it’s unrealistic to expect no pain, it’s not a painkiller, that’s just an effect from it reducing inflammation. Also in my case I have fusion of left SI joint, my ribs are fused and only have 0.8cm chest expansion and my C6-7 is fused, so with there being damage to my spine I have to expect pain. Life is certainly better than it would be without benepali

[Redisluck]

Hi x thanks 4 replying 😊! Yes I think my injections were probably more effective at the start but like you say,it does give quality of life being on it and without it, would certainly lead to more deep pain! When were you diagnosed with it?

[Hidden]

I'm on cimzia for AS, been on it nearly a year. I'm not blase about implications of being on it, I just follow the chemo protocol, careful with food, infection in others etc. Really, it's the best tool for AS in the rheumatologist box and I consider any risks worth taking to try to stop fusion. I have no fusion but rheumy said if I didn't take the drugs I would be fusing within 5 years in her opinion, which meant I'd still have been in my 40s.

[patricia_210]

Hi I’m on Benipali for the past few months

I didn’t realize the risk of the sun even though I was sitting out last week and got a tan very quickly .I was probably lucky I didn’t stay out too long .

Thanks for that advise

Regards

Tricia