Benepali wearing off?

[Ouchyjenna]

Hi, I've been taking benepali now since January. Apart from some infections I've found that it really really helped my pain and stiffness. However over the past month the pain and stiffness has gradually come back. I have had brief flares whilst on the benepali but this feels different. It feels how I felt before I started the benepali albeit for the middle of the day when the steroids kick in but by early evening the stiffness and pain come back. Is this normal, has anyone else experienced this. I'm feeling a bit stressed so it could be that. I'm worried to speak to my rhemy as in March the last time I saw him I was doing great and I'm worried he's going to think I'm maki ng it up. How long has benepali worked for you?

[andy9131]

Nope your not alone I’ve only had 9 injections my pain is worse stiffness is horrible fatigue is worse other health problems since starting. After talking to specialist nurse who intern has spoken to consultants they are putting me back on enbrel, was on this for two years with very little problems. They are putting every one on this due to it being cheaper

[Ouchyjenna in reply to andy9131]

Unfortunately I never tried enbrel. I m glad that you've manage d to go back on it. Hopefully you will get so me relief soon

[Nsmith13]

Yes lots of infections as well not good for everyone not been offerd enbrel only rituximab which I really don't want

[helenlw7]

I had been on Enbrel for about ten years before I was changed to Benepali in March. On the Enbrel I wasn’t totally pain free but i could do normal every day tasks. Since Benepali I have been in pain in all of my affected joints. I saw my gp on Tuesday about my blood test results, which were good, and mentioned the Benepali. I got a phone call from my rheumatologist’s secretary saying that they’d had an email from my gp (he hadn’t said he was going to do this!) and my consultant was happy for me to go back on Enbrel.

[lucymead]

Oh I am pleased that others are having problems. I too have been on other DMARDS that have not been good for me. Rhuemy made a big point of getting funding for me to start on Biologics, BENEPALI. I found it did work but I have had 4 different infections since starting it in January.Iam off it again because my GP is not happy with my progress. I have a bleeding ulcer in my gullet and nose, itching and a rasping cough, my blood pressure is high among other things. My GP says I would be better on Enteracept but Rheumy nurse says I should go back on Benepali next week.

[Nsmith13]

It's sounds so unfair we should be able to at least have a choice we're the ones suffering !!!?

[Witness2]

I’m not sure from your post whether Benepali is your first Biologic? If not, what I’m about to tell you might not be relevant!

I switched from Enbrel to Benepali but my condition deteriorated very quickly - in the way you describe. My rheumatologist reckoned it hadn’t been effective at all and that I was kept OK for a short time on Benepali by the residual effect of Enbrel. He switched me back as quickly as the CCG would allow, within a month. You should be able to as well. Push for it! Good luck.

[Ouchyjenna in reply to Witness2]

Yes it's my first biologic. Seems as though people are having lots of problems when switchi ng like you