Benepali miracle!

[JEM95]

I’ve been struggling with my RA for the last 10 months, and was recently approved to take Benepali. I’ve had periods of remission but never anything like how I used to be pre-RA.

I had my first injection on Wednesday. I woke up on Thursday morning feeling completely different - not 100% pain free but hugely better than I was 😀

I can’t believe it! The nurse said it works instantly for some people. I am so thankful - RA has overshadowed everything for nearly 7 years but this is the absolute best I’ve felt.

Has anyone else experienced this with Benepali? x

[Lolabridge]

Wonderful news! Whilst it didn’t work sufficiently for me I did see some improvement. The drug I’m on now seems to be working well.

Let’s hope we continue like this 🤞🏻

[JEM95 in reply to Lolabridge]

Thank you. It is indeed wonderful news! I’m so excited to be feeling nearly normal - it’s like Christmas!

Good luck with your drug x

[Hidden]

Absolutely delighted for you., love a success story

[JEM95 in reply to Hidden]

Thank you! I’m grinning like a Cheshire Cat!

[springcross]

I'm glad for you. Long may it continue. x

[JEM95 in reply to springcross]

Thank you x

[ColinRR]

That’s great news! Nice to hear a success story.

[JEM95 in reply to ColinRR]

Thanks! Any positives in this RA game are precious!

[Happygranny1958]

Brilliant news, hope it continues to work well for you. X

[JEM95 in reply to Happygranny1958]

Thank you - fingers crossed (I can actually cross them for once!!) x

[Hidden]

You started our Saturday with a big smile.. Thank you. So good to hear your news. Enjoy enjoy enjoy!

[JEM95 in reply to Hidden]

Thank you! x

[Hidden]

That’s excellent news. I have been taking this drug etanacept for just over 20 years starting with Embrel and now benepali. Like you it was life changing. Other than two post operation flare ups when I was off it for too long I have remained in remission. On a personal level I joined a gym, starting exercising and lost weight as no more steroids. I had more energy to deal with the pressures of work. I was lucky to have been offered this drug in its infancy. I wish it had been available when I was first diagnosed 20 years previous to that as I would have been saved from alit if joint damage. Just enjoy your freedom to move 😁

[JEM95 in reply to Hidden]

Wow, that’s interesting to read. I hope it works as well for me long term as it has for you.

I’m on a high dose of methotrexate and still on hydroxychloroquine. The plan is to gradually come off the Hydroxy and to reduce the MXT.

Thanks for posting it’s adding to my positivity!! xx

[Hidden in reply to JEM95]

I don’t take anything else . Methotrexate didn’t suit me at all and I’ve been fine with nothing else . Naproxen every now and then. Good luck and keep moving your joints 😁

[JEM95 in reply to Hidden]

Thanks - Id love to be free of MXT one day 😀 Im a great believer in exercise - I walk miles every day with my dog, and do pilates (without my dog!).

[Paula-C in reply to Hidden]

I'm seven years now in remission due to enbrel and I sometimes wonder how long it's shelf life will be with me. Twenty years! now that is amazing, hope I'm still doing well after all that time.

[Flossie-M]

This is wonderful news, and I totally understand how you feel. I have been taking benepali for four years ( I was changed to this from the Biologic equivalent which works equally well) these medications gave me my life back . So happy to it’s the same for you, enjoy the benefits 🤗xxx

[JEM95 in reply to Flossie-M]

Awwww thanks. Just feeling better makes me realise how much pain I had been in for so long and how that had become my normal.

I’m so pleased it has been so positive for you xxx

[Paula-C]

I'm on enbrel (Benepali is one if the biosimilar drugs to this), both my specialist nurse and the nurse who came for my first injection said that some patients feel it start to work the next day, one describing it as a "ta da" moment. I was one of those patients. Twelve weeks later at my first follow up appointment I was in remission and now, over seven years later I still am! No side effects, no pain relief required. xx

[JEM95 in reply to Paula-C]

Fantastic! I have had a ‘ta da’ moment then. I feel so lucky xx

[patricia_210]

So glad for you

I was on Benepali myself and it worked well for me also

I had to change and am now on simponi which is also working well

😀

[JEM95 in reply to patricia_210]

Thank you - it is such a relief! x

[helixhelix]

I was hoping on a instant “ta-da” moment when I started Enbrel (the original) but it was not to be. I felt so downhearted as I’d heard that it can happen immediately. After 11 weeks I was on the verge of giving up, and then week 12 “ta-da”!! Isn't it wonderful!

Enjoy! But don't go mad quite yet and overdo things....

I’ve now stopped all the other DMARDs apart from MTX , and am dropping does of that now. Down to 15mg...

[JEM95 in reply to helixhelix]

Thank you. It really is wonderful. I can’t explain how different I feel, this is a turning point for me 😀xx

[Paula-C in reply to helixhelix]

I've just had my dose dropped from 15mg to 10mg, i thought at the time it was a big reduction but I trust my consultant. I waited till after Christmas and (touch wood), I'm fine at the moment. I'm going to ask when I see my nurse in April what is the lowest dose that you can go down to.

[Shalf]

This is a very positive post and such a boost to read. It certainly shows that there is light at the end of the tunnel. Some tunnels are just longer than others.

I'm forever hopeful. Looking forward to joining you all soon! xx

[JEM95 in reply to Shalf]

Thank you - I wish everyone could feel the same as I do. I’ve struggled through various treatments, and feel so lucky to have found what works for me. Keep positive xx

[hedgehog45]

That’s fantastic ! I had a similar experience when starting Benepali 15 months ago and I still feel almost ‘normal’ again. It’s completely changed my life and I’m forever thankful that I found the right drug for me - long May it continue! I now work again and can do many things I thought I could never do again so a bit of a miracle really. Wishing you all the best with the new regime and a continued pain free life.

[JEM95 in reply to hedgehog45]

Thank you so much - that is fantastic to hear. I really can’t believe this has happened to me. It’s so good that the benefits seem to be long lasting. I know with RA things change over time, but I’m living for the moment. Yippeeeee!xx

[hedgehog45 in reply to JEM95]

I’m so happy for you. I have to pinch myself sometimes to think that this miracle has happened to me after how dreadful I have felt for so long. Long May it continue for us both! 💕

[rab1874]

Great news Gem and long may it continue,it worked well for me for 6months then stopped working as it got used to my system,I’m on my 4th biologic now Tomixilumunub (Angenvita ) and it’s been great so far along with 20mgs methotrexate been on it 5 months now xxx

[JEM95 in reply to rab1874]

Thank you! Even if it stops working, it is a massive step that I have been approved for biologics now, and there are other options. Hope your Toxiwotsit continues to work for you xx

[Shalf in reply to JEM95]

Toxiwotsit 😂 love it! Haha

Hope my Amumbiwotsit works! xx

[Mmrr]

A good success story, wonderful.

[JEM95 in reply to Mmrr]

Thank you! x

[Bluebird335]

Glad to hear it! I was put on it 14 years ago and it is still working well for me, I now have my life back! I too noticed an immediate difference and it continued to improve over the next 6 months. So, plenty for you to look forward to, start making plans!!

[JEM95 in reply to Bluebird335]

Thank you! Great to hear it worked for you. Onwards and upwards!! xx

[Susiebee31]

I had the same with Cimzia, 25+ yes pain swelling and disability and the drug in 24 hrs made a huge difference. Shame my feet and hands etc were destroyed waiting! So pleased for you😃

[JEM95 in reply to Susiebee31]

Thank you! These drugs are amazing, aren’t they? x

[margaretpgeecross]

Same here. Benepali gave me my life back. Happy for you.

[JEM95 in reply to margaretpgeecross]

Thank you!

[dynamodi]

it worked brilliantly for me. Unfortunately after being diagnosed with breast cancer, I can no longer take this TFN as it lowers your immune system. The very best of luck with it. It was the best thing since sliced bread . still waiting to find something that works as well

[JEM95 in reply to dynamodi]

Thank you - I hope your wait is over soon and you find the right treatment x

[Soundofmusic52]

Took mine 5 months to work but yes it’s my miricale drug I feel 100% since been on benepali x

[JEM95 in reply to Soundofmusic52]

Marvellous! I’m so pleased to hear such positive findings. Long may it continue x

[Hessie5]

Love posts like this - provides such hope. Over the moon for you Jem - here’s to remission and beyond! ☺️ - Hessie

[JEM95 in reply to Hessie5]

Thank you so much!

[Raven15]

Well mine wasn’t instant as in next day but certainly felt so much better in a couple of weeks. I didn’t believe the nurse when she said ‘if it works you’ll feel like you’ve got your life back’ but it’s true 😄

[JEM95 in reply to Raven15]

Yes, I feel like the old pre-RA me again😀x

[Hidden in reply to JEM95]

That’s brilliant... I’m on elerzi ( etanercept) 5 weeks seeing great improvement but then got a chest infection it for over 3 weeks and boy did I miss it. Took my first injection after chest infection on Thursday but was really struggling Friday and I thought it’s going to take a couple weeks to start to work . Saturday got up all stiffness had gone still going strong today.... long may it last 😁

[JEM95 in reply to Hidden]

Fingers crossed (I can do that again now!) x

[embroy]

I had Benepali for about 3 months or so, still in pain, but got on with it. Entercept didn't work, so didn't Benepali.

Everyone's body is different, I am so glad it worked for you. Good luck...

[COFFEEPOT222]

are you also on methetrexate injectables at same time as beneali as 18 months ago they found methetrexate adter 5 and half years of being on it was causing bad problems with my liver told im to ckme straight off methetrexate and benepali i said cant i just stay on benepali maybe that will work I GOT TOLD NO YOU CANT YOUR TO COME OFF BOTH OF THEM since then they have tried me on one after anothef strong med for ra and 4 meds later and nothing working iv lost my job due to this and in constant flare lifes hell glad all is working for you xx

[Raven15 in reply to COFFEEPOT222]

I’m on Methotrexate & Benepali but the nurse said I may be able to stop the Methotrexate after 1 year if I’m still pain free.

[JEM95 in reply to Raven15]

I’m on methotrexate and hydroxychloroquine as well as the Benepali. I need to come off hydroxy, and the hope is I can reduce the MXT (currently 22.5mg). It’s always a bit of a voyage of discovery to find the right balance x

[Raven15 in reply to JEM95]

Yes I also had to stop Hydroxy as it was affecting my eyes

[Feank in reply to Raven15]

I have just started benapali and at last have come off methotrexate... Feeling great. Think the methotrexate was making me rubbish!

[pah140]

That’s wonderful to hear and I had exactly the same experience after 5 years of frustration.

[JEM95 in reply to pah140]

Thank you - it’s so good to hear it worked for you too x