I started on Benepali in March after 2 years of non-biologic medication not working. After just 1 week it had started to reduce my swelling and by just 4 more weeks it’s like my joints had no inflammation. In September my consultant confirmed I was in remission. It was amazing after 2 years of struggle.
Recently, due to a tooth infection and going on antibiotics, I had to stop meds for two weeks. My swelling came back after a week and despite being back on my meds for 5 weeks, the Benepali and 10mg MTX has no effect, with the swelling a pain getting worse each day. It’s as bad as the days before I had any treatment.
Has this ever happened to anyone else? I know that the Benepali worked so well and I know as I’m going into the 6th week of being back on it with no effect, any more weeks won’t change that. How long would the doctor decide it is no longer working and would they switch me to another one or change the dose?
Thanks for your help, I’ve gone from elation to being so down, especially as I’m a full time teacher and have 2 young kids.
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Aperson99
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I'm so sorry to hear about benepali not working. I can only give you my experience with it.I thought benepali was beginning to help me after a couple of weeks of injecting. After around 6 weeks, I was out one day and began to feel unwell, soon after the aches, joint swelling and so on returned and the gains I had made disappeared.
Rheumatology kept me on it for a further 6 weeks or so when I said no more...and I was changed to baricitinib.
Personally I would not hang around, you know your own body better than anyone.
Thanks for that. You are so right about how you know your body better than anyone. Every morning is that moment where you think is it worse or better today. Is the slope uphill or downhill on the way these drugs are working. It can be a slow process for the drugs to fully work and then a matter of just days or a week for it not to work.
I started entanercept in February initially started really well , was have slight side effect after injection then I got a chest infection was off it for 4 weeks. Restarted but never got that initial relief again .. covid came had no choice but to continue side effects worse and more prolonged swelling mobility and fatigue rampant. Stopped in September so much better started baricitnib last week.
I had no choice but to continue even though I knew it wasn’t working... thank god normal ish clinics are resuming don’t leave it contact your team if it’s not working a new medication takes time to set up and will only prolong the agony. Good luck
Thanks so much for replying and your advice. I have to have my root canal drilled and cleaned out as it seems there was a long term abscess and having it done privately to stop a chance of another infection and messing with my meds.So I’m about to stop my meds again for 2 weeks! At least my joints can’t get any worse, but I guess I will have to prove a period of time after that, that the drugs don’t work. I’ll email Rheumatology and I guess if I’ve met the NICE criteria for one biological, is it a more simple switch to another and is that a typical thing that is done when a biologic stops working?
Yes I went from one biologic to another but you still need funding approval it normally takes 6 weeks before you can get your new meds but covid curse meant I waited 3 months. So keep in touch with your team so there will be a documented history, helps things move a bit quicker
Yes, I'm now on my 4 th biologic , toficitinib, and feel I'm making progress with this one. Changing hasn't been a problem when rheumatology and I have agreed the biologic isn't working.
Obviously my history is less relevant because of the time history, but possibly may be informative nevertheless.
I had a version of RA about 15 yrs ago which went away completely after using hydroxychloroquine for about a year and a bit. No signs until about two years ago, this time it is a slightly different type of RA, and the rheumatologist (a different one because my excellent earlier one had huge a waiting list) prescribed Prednisone, and then Methotrexate by injection. It took about 7-9 months to completely stop the Prednisone and I had to have Sulfasalazine added before I was able to completely get off the Prednisone. The choice of Methotrexate was because they felt it was better suited to my different version of RA to prevent damage. Today I'm still on MethoT but feeling as pain free as with Prednisone, which is really saying something. What I am pretty certain also helped a lot was tons of exercise of various types. Look for my listing of things that help in addition to meds on this forum.
So sorry. That happened to me. I was on Imraldi and had 3 months pain free. It was great. I then had a UTI and had to miss 2 doses of Imraldi but when I went back on it, it no longer worked. Am now on another biologic, Cimzia and methotrexate waiting to see if they work. I share your despair as you feel you have found the perfect drug and then so much disappointment. Keep going, though, there must be something for people like us. Am now desperate to avoid having to stop these drugs.
That is just my situation. Thank u for your response and I hope yours works better. On an immunological level I’ve no idea how that is happening as the TNF inhibitor is mimicking a compound naturally produced to switch off the TNF response so, it’s as if a short break enables the body to make some change or response to no longer respond to this compound. Although there was nothing more I would have done I had an expectation that if it worked so well I would at least get some years out of it. I had been told that sometimes after 0.5-3 years it can just stop working no matter what. Maybe the 2 week break was enough time for my body to recognise the biologic as a ‘foreign’ antigen and produce antibodies to it.
I think I’ve read here before that if you have to stop your biologic for a time there is the risk it will not work so well when you restart it but there are lots of others you can try. I hope you get some relief soon 🤗
It took a year and a half for Benepali to work. But it was worth the wait! It has completely revolutionised my life! I had no side effects so I stuck with it. Wonderful.
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