Good morning, all! I've been taking Benepali for 6 weeks along with MTX 20mg. It's the first biologic I've tried and so far haven't had any improvement. I know the info says it can take up to 12 weeks but have also heard people saying they saw results much more quickly. Has anyone found it's taken the full 12 weeks? I tried not to hope, but I'm so disappointed.
Anyway, thanks in advance and hope you all have a good day.
Terry
attatel. I am so pleased you posted about benepali. I am on week 5 of injections, no MTX due to side effects. My daily prednisilone was increased on week 3 of benepali from 5 to 15 mgs due to the RD becoming unmanageable for me. I got a good result from the prednisilone increase.
I am just about to begin a steroid taper to see if benepali is now helping.
As you say a bit disappointing that there is no obvious improvement so far, but I've not given up hope yet.
I'm not due for a review of benepali until the end of June. How about you ?
I am also finding the benepali injection pen a bit 'clunky' at times in comparison to the much smoother MTX metajet pen. I've had one or two scary moments when initially I've been unsure if the pen has actually fired.
Please keep in touch and let me know how you get on ?
Yes definitely! I'm seeing the nurse in a couple of weeks, so I'll see what she says. I haven't left the house since Christmas except for medical stuff, and now I'm having to use a walker. I really hoped that I would see a improvement quickly but so far, so meh. The last steroid jab I had didn't work either. It's starting to feel personal! 😂
No problems with the pen so far although I haven't tried any other kind. It is a bit clunky, as you say.
I hope you get some benefit soon! I'll be really interested to hear. Good luck!
Terry
I'm on Enbrel, which is the original to Benepali. It took the full 12 weeks to start working and then another 8-10 weeks to really be effective. I was hugely disappointed at the start having heard people say it worked straight away, so was getting frustrated. But now it's great! If you're not having bad side effects then hang in there for a while longer.
(And the pen is aakward too - very hard to click)
Thanks so much, HH, that's given me a bit of hope! I thought by now I'd be prancing around like Nadia Comaneci on speed 😂 but absolutely nothing.
At least I know it's still possible that it'll work.
Really helpful!
Terry
I'm week 9 and still waiting. .
Really hope it works for you. It's so difficult to be patient when you're desperate for some improvement. Can you let me know if it starts to do it's stuff, please? Thanks for replying and best of luck with it.
Are you seeing any improvement with benepali yet ?
Hi , it must be week 11 or 12 now and no improvement. I don't really have the joint pain others seem to have . It's the feeling very unwell , completely washed out , unable for much that's really affecting me ! I look fine but the constant unwellness in my bones, spine and ribs is wearing me out !
I'm sorry to hear that. 
I hope it starts to work for you soon. I haven't seen any improvement yet either. Week 9, so still hoping. Some people who've replied have had to wait much longer tha I thought, so maybe we will see results soon. Fingers crossed (metaphorically).
It's quite depressingbamongst other things . But hopefully. ...will let you know x
Hi I’ve been in Benepaly for 6mnths and after all this time I’m beginning to improve very slowly xx
Wow, that's much longer than I'd hoped, but I'm so pleased it's finally working for you! You must be delighted. Well done for sticking it out, and thanks for replying. I can see that I might still get some benefit, so it's really helpful.
Terry
How are you doing ? Any improvement on the benepali yet ?
Sadly, not really. Still hoping though, given the experiences of people who've replied.
How about you? Still seeing a bit of improvement? I hope it's working for you!
No, I've really slipped back after an initial improvement. My shoulders and arms are like lead weights, I can't drive or do much around the house and the brainfog has returned. I'm worse than I was before I started benepali. Very disappointing. I won't be continuing to take it if things don't improve very quickly. I'll see how this week goes.
Oh no! I'm so sorry to hear that. You must be so disappointed! I know you were really starting to feel it was working. Maybe you can try a different type that will be better for you - sounds like you're having a rotten time.
Seems there are many that have problems with benepali. I really wonder if same people have problems with Mtx side effects, this would be an important finding.(?)
It seems so Simba. I've picked up again today, no pattern in what I'm doing/eating/sleeping.
It was most strange I felt very well at 12 mid day on Tuesday, walking well, minimal pain, clear head. Went for a coffee , nothing different to normal, began to feel unwell , my shoulders went from no pain to so painful within 30 minutes and the brainfog descended at the same time. I have started a wee class, so I limped to it and felt so unwell throughout, stumbled home and had 4 poor days. My gut too, went from rumbling along, to being sore, to no pain and back to rumbling along today. I've lost over 7 lbs in 16 days ( not a bad thing) . It is all most strange. I'm keeping a journal of what is happening.
How long will you wait for Benepali to work?
I have an appointment with the nurse specialist mid may, that will be 11 weeks I will have been on benepali. So if no sustained progress I'll chat other possibilities with her then (as it's pretty near the 12 weeks recommended trial). My full review is the end of June, but I'm not happy to go that long unless things improve.
How are you doing?
I've had slightly less stiff knees the last three days, but I'm not ready to put that down to the Benepali yet - we've all had a couple of days when we seem better only for everything to revert to horrible the next day. We'll see.
It sounds like you're having a really rotten time of it Mmrr, so I hope you can get something sorted out when you see the nurse.
False alarm about the improvement. As you were.
Short term relief with Benepali?
To Give Hope
Never Give up Hope
Here I go again... benepali & tummy?
