Due to start Benepali in the next few weeks and feeling very apprehensive. Can anyone give me any feedback of their experience of this drug.

[Kate7218]

New to Benepali

[Barrister]

I’ve been on Benepali for about 18 months now, also injecting MTX. It seems to be working ok after a rocky start - I was on Enbrel first which I felt worked better for me but moved to another area and they only prescribe Benepali. I’ve not had any side effects but the injections really sting- I take it out of the fridge a couple of hours before I use it.

Clemmie

[Kate7218 in reply to Barrister]

Thankyou. I’m in denial and do not want use it at all.

[KittyJ]

I’ve been on benepali for just over a year now and it’s made a big difference to my life and disease. I put off going on it for a long time because I was scared and that was silly. It’s allowed me to get off steroids after being on them for 30 years. I’ve had no side effects but I do leave my injection out all day before use as it helps with the sting.

Keep talking to us here as we are here to support you 😊

[Kate7218 in reply to KittyJ]

Hi Kitty

Thanks for feedback. I’m in denial about my RA and to be honest I don’t really want to inject at all. I have a nurse coming to assist me for the first one so I have to do it. My disease activity is high but most of the time I feel fine.

Feeling reluctant!

[KittyJ in reply to Kate7218]

It helped me to think about the damage that was being done to my joints whilst the disease was not being controlled. The associated pain, loss of movement and the effect that will have on you and your life can be huge. Difficult I imagine if you feel fine most of the time. Biologics weren’t around when I was diagnosed so I came to them quite a long time after diagnosis and the damage was already done. The difference in my disease activity since being on benepali is what keeps me taking it even though I’d rather not. I try not to think too much about it.

It might help you to talk to someone about how you are feeling about your diagnosis and NRAS have a good helpline 0800 298 7650 and some good publications to read. Do keep coming here though as I’m sure there are lot of us who felt like you do now. x

[Kate7218 in reply to KittyJ]

Thankyou for your kind and helpful reply. I almost need to feel pain to justify taking meds! I know this is not the case with autoimmune diseases.

[KittyJ in reply to Kate7218]

I know exactly what you mean, I’m the same 😊

[Hopefulfuture]

I’ve been taking benepali for about 3 months now. I think it’s helping. Take it out of the fridge for a good 2/3 hours to warm up. I inject into my stomach I squeeze a bit of flabby tummy and it’s really nearly painless. A great tip someone left on this group a while ago. Go for it I hope it works well for you.

[polltax]

Hi Kate I have been on once weekly Benepali injections for nearly 3 years now with very few problems. I have been on several other drugs before Benepali with some horrific side effects so I can understand how you are feeling. I notice someone has mentioned how the injections sting. I take mine out of the fridge at least 1/2 an hour before and inject into my stomach a lot less painful than your leg. Good luck I'm sure you will soon be feeling a lot better.

[Balletmum71]

Hi Kate, I've started Benepali and found it has helped me a bit .

I'm slightly complicated as I haven't been able,to get off the steroids because I have bad asthma - however, I had asthma before I began the Benepali treatment so please don't read anything in to that .

I haven't been switched from another biological to a bio similar either . This is my first encounter with a biologic.

It seems to be working we think - hard to tell with high dose steroids overlapping .

The injections themselves aren't too bad either . My rheumy nurse suggested in the side of the upper thigh and I don't get any stinging sensation . Once you are in a routine with it all it's quite straight forward .

If you do get a heavy cold or infection then you will have to stop but only do that under guidance from your gp or Rheumy nurse .

It's like any other medication for RA. One person will be tickety boo with one medication and will sail through and other people,won't tolerate it all . But until you try you can't tell .

I hope your experience will be a positive one for you and that you will find relief and get some quality of life back .

Take care ,

Becky