Hello! This is my first post here and am looking to hear from anyone who has taken Benepail (or biologics in general).
Was diagnosed with Anklosing Spondylitis (AS) earlier this year but have had symptoms for over 10 years. Tried a host of anti inflammatory meds but none worked and now due to start Benepali in the next week or so.
I’ve got mixed feelings about the drug and the side effects scare me but need to get the inflammation in my back under control.
If anyone has any experience with this condition and meds I’d love to hear from you!
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seaholly
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I have AS and RA. I was diagnosed in 2014. I have had two biologics and I’m currently on enbrel . I take this, 50mls weekly. I also take 20 mg methotrexate weekly, 10 mg leflunomide daily, 90 mg arcoxia, tramadol and oxycodone when needed.
This combination seems to hold me at the minute.
However, I am told I have a particularly aggressive fo and over the past two years I’ve had both hips replaced, both knees replaced and surgery on my feet.
It’s not been great but what I will say is when your medical team fund the right meds for you, it can be life changing in some cases.
I know that even though I can’t say I always feel great, I can say that with the biologics and DMARDS, the quality of my life is so much better. The benefits most definitely outweigh any risk .
The very best of luck with things and let us know how you get on.
Hi seaholly wishing you a very happy new year, I started Benapali a month ago and to be honest after going through all the usual routine with new meds i know the possible side affects can be quite scary but the one thing i have learned is that what could affect me may not affect you the same so anything the specialist suggests that could improve your quality of life has to be a positive move and should be worth trying, I have to say i havent noticed any different side affects yet so hoping all is ok with benapali so far so good so hope it works out for you.
Mine is sero negative inflammatory arthritis but have been on various biologics since 2003 - it is still a case of finding the right one for you but once that is found they can change your life. I have far few side effects with the biologic group of meds than the DMARD group and biologics have really changed my life. You need to be aware that if you do get an infection (if not always) that you may need to act sooner than a 'normal' person but generally (not always) you may be slightly more susceptible to viruses and take slightly longer to get rid of them. You just need to be more aware of your own body. Farm
I am 6 weeks into Benepali after trying lots of different Dmards over about 3 years all had significant side effects for me. So far all Good and no side effects.
I have had RA diagnosed for the past 5 years. I have been assessed for Benepali and am about to start. It really frightened me reading up on it, however my rheumy feels side effects are fewer and talking to folks on here the majority agree.
I have always been wary of taking anything - however I am also fed up living in pain. If I can get a decent quality of life back and be the person I once was again, I am here eagerly waiting to start! Keep us posted how it progresses.
Hi I've been on Benepali since August and Methetrexate for 3 years and I feel the Benepali has stopped working for me , I've had a steroid injection to tide me over until I come back from holiday but feel I will have to move on to something else, I didn't have any side effects with it so hopefully it will work for you xxx
Hello - I am due my first biologic Entracept tomorrow! Like you feeling anxious. I told my consultant I shall take it for 3 months and see if it’s for me. I guess my hesitation is it is stronger than the MTX but he assures me it is better and more targetted to treat disease, the reason they don’t dish it out is due to the high cost. So I shall go with it and provide updates! All the best.
I started taking entracept end of November 2012, felt it start working the next day. The following February I was in remission and still am. Apart from one short lived flare in 2015 I don’t need any pain relief meds. I’ve had no side effects at all. Hope it works it’s magic for you too.
Hello, I also did the whole host of DMARDS first then moved to Humira which I had a bad allergic reaction to. Then I tried Enbrel and it worked so good it put me into remission. Years after being diagnosed with Rheumatoid Arthritis, I was diagnosed with Inflammatory Bowel Disease - Crohns.
Enbrel does not treat Crohns, so I had to switch to a biologic that treats both my disease. I just started Remicade infusions and only had one loading dose so far.
As my prediction, my RA is comming out of remission and waking up. I am back on Vomimvo after not needing it for over a year. All my joint pain is comming back. I am hoping that soon the Remicade kicks in and quiets down my RA and as well treats my Crohns Disease.
If the Remicade does not work for my RA then I’m gonna be in big trouble and back on the medication-merry-go-round. It took years to find a drug that worked for my RA (Enbrel) and really I had no choice but to take a risk and try Remicade as my Crohns is very active and it was either Remicade or surgury and I really want to keep my bowels.
For some a biologic works fast, for others it takes months to build up in the system to work.
Enbrel took about two months to fully work, hoping Remicade is the same.
Biologics carry a lymphoma risk, but the risk is low, more dangerous for teenager age patients. You have to decide if it’s worth the risk.
I have been on Ebrel for 5 years which has helped greatly with my RA, Lupus other auto-immune problems. Was taking methotrexte which elevated my liver values. It is trial and era with our medical disease.
Welcome 😊 there’s so much experience on this forum and people are so willing to help and share experiences to help each other...
I know the warnings for all the AS Meds seem scary initially, it’s a big thing to get your head around. Feels as if you’ve got to trade one thing for improvement in another, it can be frustrating. Fingers crossed you do ok on the Anti Tnf and they work as they are supposed too..
If they do they really can be life changing.
I have AS, having been diagnosed in 2014, like you I had symptoms for many years before an actual referral was made to Rheumatology in 2012 which resulted in being told AS was suspected straight away but I wasn’t formally diagnosed until 2014.
I went through the standard Meds along with numerous fluroscopic injections into my sacroiliac joints eventually commencing Anti TNF in Feb 2016.
I was initially on Enbrel and it was amazing. I was almost pain free and back to my active self. So for me considered to be worth the risk factors, I didn’t really struggle too much side effects wise once my body got used to them each week.
Unfortunately after about 15 months I started to feel pain in my hip and back again. It wasnt major and I was still much better than pre anti tnf but I did start to need tramadol and oramorph when the pain got too bad when at work etc or when the hours were longer than average.
I was also changed to Benepali not long after this which seemed to cause major upset to the successful management of my AS. (Despite being sold to me as an identical biosimilar which saved the nhs money but there would be no difference to me as the patient)
After seeing my consultant i was also diagnosed with peripheral arthritis at various sites and started on Sulfrasalazine. I was also asked to remain on the Benepali until things settled down with the new drug in the mix.
My fatigue hit the roof since starting the Sulfra and it is now been suggested that my body has started making antibodies to the anti tnf and as a result of this I am having to start on 20mg methotrexate later today.
I guess this explains why I am having to take oramorph again because the pain gets to such a high level at the moment that nothing else touches it at times.
I am not looking forward to taking methotrexate because of the likely side effects (put it off just before Xmas but now got to try it in the hope of getting back on track again) this is the option my Rheumy wants to progress before taking the step of going down the road of changing the Anti tnf type.
I dont know if it’s really as simple as is being suggested especially as other parts of my body seem to be being affected quite signifantly since this all flared up again.
From what I have since read during all this Benepali seems to work well as a first Anti Tnf but less well for some when switched over from another anti tnf. As it’s your first one i really hope you get the relief I did initially,
Hi, you sound very similar to me. I have AS and has taken about 10 years for proper diagnosis! I started Benepali in June and think it’s great. Inject once a week before bedtime. My advice is take it out of the fridge for a couple of hours before you inject- it takes the sting away. I also inject into my stomach as I had a bit of trial and error as to which area worked best for me.
Good luck with it and fingers crossed it works for you as well as it has worked for me. Without it I cannot function due to immobility and pain, with it I am practically symptom free!
Hi. In hindsight I had symptoms of AS for approx 16 years before I was diagnosed. It took one massive debilitating flare at the start of 2016 that came on suddenly out of nowhere for the ball to get rolling which resulted in a diagnosis of AS in October 2016.
Started Benepali in December 2016 and have to say it was a wonder drug for me initially. Although have to admit I feel that it has stopped being so effective in the past couple of months, after I had another bad back spasm and began to develop pain in my right hip. At the time though it was the best decision I could've made to start Benepali. It allowed me to go back to work, and almost get back to my old self. Initially, the thought of all the side effects really scared me, although i never had any problems with infection etc that i thought i was going to have. And the injections are so simple. I don't give them a seconds thought anymore. I do hope it brings you some relief soon. Mhairi. x
Thanks everyone for your responses, Benepali didn’t go down too well with me. I had an allergic reaction to it and am under strict instructions not to take anymore! 😐 back to the drawing board.
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