Hi iv just started on benepali injections havent noticed much of a change yet but only been on them for 4 weeks im a hcw and finding my job very hard do iv had to go on sick for a few weeks iv done this job for years and always struggeld on but its come to where i was just coming home and crying as i was finding things too hard i so hope theese injections help im also on a lot of pain medication im so fed up of taking so many tablets but if i dont take them the pain is so bad iv had about 8 injections in my back they have helped a lot they were done around 3 months ago im just finding a little tweek now and then coming bk in my back so will tell the consultant when i see him soon i have psoriatic arthritis ostio arthritis joint hypermobility and facitt joint problems also server arthritis in my spine sorry for any spelling mistakes is there anyone else on benepali and is it helping you thanks marie xxx

12 Replies

  • I will be interested to hear how Benepali helps you. I am due to start in the next week or two, for my Ankylosing Spondylitis . Like you I am a healthcare worker, I work as a nurse on a busy ward, and every day is a struggle. I am hoping it is the miricle my Rheumy team claim it to be. Is your sick leave due to the starting of Benepali or were you already off. I'm hoping not to take time off, although seeing out of hours dr in an hour as I have a chest infection and exacerbation of asthma. My AS has fused my ribs to my thoracic spine, so I can't take deep breaths 😏. Good luck hope it kicks in soon x

  • Aww just wrote bk and lost it luv im off work due to finding things too much at the moment iv worked on a nursing floor for 10 years struggling and fed up of strugglung and its come where iv had to admitt things are getting a bit too much at the moment i was on enbrel for 7 years and unfortually had to stop with the injection due to getting drug induced lupas and something called majocolist disese that has finaly healed so after a 3 year brake the rhumy and dermotoligist have said for me to go on benepali with caution so they are keeping a very close eye on me i so hope the benepali works for you keep in touch luv because with any infection you cant do the injection or if your on steroids have you had all your bloods done and tb bloods also xrays good luck marie xxx

  • Yes had my bloods checked. Was slightly nervous about the tb as I nursed many tb patients in Glasgow where I trained, but thankfully came back fine, I'm on long term steroids as I was wrongly diagnosed as having polymyalgia, my Rheumy says that my steroids won't affect Benepali. I live in England, and have just had funding approval a few weeks ago. Take care. I hope to manage 3 more years then I can retire 😁

  • You and I share the history. I too am an ex nurse, I too was diagnosed in 2014 with pmr, I too am still on Pred (4.5mg), I too am due to start benepali in a couple of weeks and I too was a little worried about the tb test

    Scary or what!

  • That is scary. My PMR turned out to be late onset Ankylosing Spondylitis, that can present as PMR in the more mature woman. Aiming to come off steroids and Methotrexate once on Benepali. Are you getting Benepali for the PMR? Good luck, hear so many good stories from biologics x

  • No diagnosis was changed to RA last May.

    Wrists showed inflammation on ultrasound

    Hey ho what's in a name!

  • Benepali has been amazing for me. I have AS. It has literally given me back my old self. Hopefully it will start to make a difference for you too soon.

  • I so hope so i was on enbrel for 7 years but it gave me drug induced lupsa and something called majoccolist disease that has took 2and half years to clear so im on theese with caution so hope they work thanks marie xx

  • Ooh that sounds horrible. Fingers crossed for you.

  • I too work as a health care professional in a busy hospital. I would struggle with working on the wards as my upper limbs are affected.

    I was diagnosed just over a year ago.

    I'm on triple therapy last one added in December. Still experiencing symptoms so they are going to discuss biologics at my next review in March. I seemed to be catching all that is going around. Just getting over a cold which always end up with a chesty couple.

    Hope your biologics starts to show improvement soon.

    What I find difficult is the continued fatigue and tiredness.

    Matilda x

  • I've been on Benepali for nearly 5 months. Beforehand, I was told that it takes 3 months to be fully effective. When I went for 3 month review and told rheumy nurse that I still have pain/swelling in left hand and left ankle/foot she said that it can take up to 6 months for it to be effective. Its true that I have less joints effected by RA at the moment but those that are give me pain and its difficult to use hand and to walk. So not sure how well Benepali is going to work for me. Hope it does for rest of you. x

  • As of the last reply you received I to was told three months then six months, so after four months I can say I do feel better, as in your case I feel you need to give it a bit more time there are many different injections that are available to you so do not give up hope I feel there is light at the end of the tunnel good luck for the future

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