Question for Benepali users.

[Frankiefocus]

Hi everyone.

Had to come of Amgevita and just stated Benepali. My question is have how long have you been on this medication and did you go into remission?

[KittyJ]

I’ve been on it about 6 years and it’s worked well for me with mtx. I’ve never been told I’m in remission but I’m mostly stable and the flares I do have aren’t major and I’ve had a few steroid jabs in that time if they go on too long which work so I haven’t had to change it.

[Frankiefocus in reply to KittyJ]

Thanks for the reply Kitty, that sounds good. Fingers crossed.

[Runrig01]

I’ve been on it 7yr for ankylosing spondylitis . It’s not put me in remission, as recent MRIs shiw it’s still progressing. However with AS they say the aim is to slow progression, which it seems to be doing, as my MRIs no longer show “significant “ active inflammation. I have fused SI & Ribs, so no chest expansion. I also have peripheral symptoms, which I take methotrexate for in addition. I’ve just had foot surgery as despite the meds, my tendons calcified causing 2 toes to sublux, and claw toes to form. It’s now starting in my other foot, so definitely, no remission. I also still have to use painkillers for the daily pains. Both knee caps have also subluxed whilst being on benepali and MTX.

[Frankiefocus in reply to Runrig01]

So sorry to learn of your condition. I have read a few articles on ankylosing spondylitis as my wife also has spine problems but not as serious as ankylosing spondylitis and taking MTX that stuff made me really ill. Can I ask have you ever changed anything in your diet to help your inflammation?

[Runrig01 in reply to Frankiefocus]

I avoid sugar, but I didn’t find omitting gluten, or nightshades made any difference. I was diagnosed by one of the medical advisers for the AS charity. She did say I appeared to have an aggressive form. Thankfully I don’t get any bad effects from MTX, despite taking 25mg dose. I’ve also had no ill effects from the benepali, and have less infections than pre biologics.

[Frankiefocus in reply to Runrig01]

I wish and pray for you to find remission some day soon as it can happen.

[Seatgeorge]

I've been on it 3 years plus mtx ,hands and knees have been really good,get an odd flare but not bad.

[Marionfromhappydays]

Just over 2 years and no

[ATBr]

Just over 2 years and symptoms are much improved. Only get occasional and short lived flares. I take it with methotrexate and the most effective meds since diagnosis 8 years ago. Hope it works for you!

[Haz58]

Since November with Sulfasalazine. They say in in remission inflammation wise. I still get pain but nowhere near how I used to be when I couldn't walk, shower or do anything. Hope it works for you. X

[MummaJoJo1]

I have been on it for 8 months, and so far it’s helping. Wishing the best for you too.

[pammi2]

been on it for 15 years, probably about a year before remission but now it has started to stop working

[Bethany02]

Was on it for about three years felt good didn't take long to work made such a difference for my hands about seven months ago failed and am now on Tociluzumab not loving it as much about a week and a half prior to next one am having issues hate the infusion thing and wishing benepali had kept working

[Frankiefocus]

Thanks everyone for your replies, much appreciated.