Benipali

[Tia1floyd2]

Hi new to this site and was wondering my consultant put me on benipali abt 3/12 months ago he was really please because it's the first time in nearly 3 years my markers have come down but what my question is can I still get a bad flair up when on this and does that mean it's no longer working appreciate some feed back Tricia

[Mmrr]

I've been on beneplai 11 weeks and am still a bit up and down. If you are having frequent flares it kinda suggests maybe you are not well controlled. When are you next being reviewed ?

[Tia1floyd2 in reply to Mmrr]

Thanks for your reply appreciate it, my next review is the end of July but I was at my consultant on the 5 th of April and he said he was extremely happy with test results, also I had to have X-rays as my hip and shoulder are bone to bone he's going to discuss this with me then aswell btw that is excruciating never felt pain like it gp has had me on all sorts of pain killers to no avail haven't got a clue what to do next,my gp phones me every 2weeks so I can't fault him or my rheumatoid consultant they are the best but don't know how much longer I can put up with this pain tbh 😢Thank you

[Mmrr in reply to Tia1floyd2]

It's the eternal problem isn't ? Computer says no, despite the way we are feeling. I saw my consultant yesterday who encouraged me to add on MTX with benepali as I'm not well controlled. But I had to come off MTX due to side effects, I'm in a kinda choose scenario, uncontrolled RD or MTX side effects. I'm have my biologics review in around 5 weeks, but it is another 5 week of feeling rubbish and life being on hold.

It is good to hear you have a supportive GP and rheumatologist.

Be kind to yourself.

[Tia1floyd2 in reply to Mmrr]

Yeah I was on mxt aswell at the very beginning of this horrible condition it worked a treat but unfortunately it affected my liver so had to come off of it,so now nearly three years later after a cocktail of drugs I'm on benipali my gp has put me on dihydrocodeine 30 mg 4 times a day which do help a little but wares of after abt 1/12 to 2 hours he had me on mst slow and fast release the oxicon slow and fast omg that made me depresses and anxious all the time I've not been able to leave my house in abt 6 weeks, can't get clothes on and can't really walk my next move is a wee scooter just to get out the house, my gp seams to think it will be a hip replacement for me he said looking at my X-rays my hip n shoulder is really bad I'm hoping the benipali kick in soon to reduce the flair but it won't do anything for my hip and shoulder sadly thr beyond repair, I think without surgery but we can live in hope god bless, hope your well thank you for your reply 🤗

[Maggsie in reply to Tia1floyd2]

Benepali seems to work well for those where it's prescribed initially rather than when swapped from Enbrel.

Don't confuse your bone on bone osteoarthritis with RA. Once the damage has been done there is very little benefit from the RA drugs.

If your pain is hip and shoulder then maybe it's not a flare, just the real pain of osteoarthritis. I would ask to be referred to orthopaedics to see about replacements.

Sometimes it's hard to distinguish between the two different types because all we care about is the pain we're in.

[Tia1floyd2 in reply to Maggsie]

Thanks for your reply, tho my hands have been sore aswell the last couple of days I know benipali isn't a pain killer,I thot it was but my consultant said no but ah was just wondering if I was having a flair and if this is possible when your on benipali thank you 😊

[Maggsie in reply to Tia1floyd2]

Yes, you can still have flares when on Benepali although they are usually less severe and shorter lived.

[Tia1floyd2 in reply to Maggsie]

Thank you so much Maggsie for your reply, yes as you say it was short lived just a couple of days thank god, you never know where you are with this condition eh but thanks again hope your well 😊🤗❤️