Sorry me again. Benepali question....

[Hels1989]

Ok so this isnt a post for the faint hearted. All dignity goes out the window when it comes to this disease for me!

So I know a common side effect of benepali is diaorrea. Well....7 days after I took my first dose I was still having it. Not frequent granted but every few hours. Just very loose. Sorry for the over share!!!

Anyone else had this with benepali or another biologic drug? I'm hoping it settles when my body gets used to the drug!

Apologies again 😬 xx

[allanah]

First never apologise for asking questions! Lol. Second I'm not on It!.... but if I had a week of that i would contact the rheumatologist or gp. Drink water so you don't get dehydrated before you talk with them. Good luck x

[Mmrr]

I'm having some gut issues, I thought it was a hangover from MTX but its the beneplai.

I get quite constipated a few days after taking it, then I go the other way, then settle for a day or two before taking it again. I try to adjust my diet in line with what is happening, I think maybe things are settling a wee bit now 11 weeks in.

[Hels1989 in reply to Mmrr]

Well I'm only on week 2 so definitely settling in for me. I've noticed since taking mtx too that I struggle knowing which foods agree with me now. I need to lose weight so maybe a bit of diaorrea will help anyways 🤣 xx

[PinkLamb in reply to Hels1989]

Hi Hels1989

I have just been taken of Benepali, due to the fact that the drug had simply stopped working for "ME". I never had the issues that you are sufferering, but we are all very individual aren't we?? I would have been on Benepali three years this Nov, but it just stopped working for me, lots of inflammation in my hands and fingers, and generally feeling very unwell,

Hope that your symptoms settle down very soon.

X

[Hels1989 in reply to PinkLamb]

Oh that's such a shame lovely. What are you trying now?

I hope.so too lovely xxx

[PinkLamb in reply to Hels1989]

Hi Hels1989

I'm going back onto Enbrel, it did work for me, but I got switched to Benepali like a lot of patients, not because it wasn't working, through costs to the NHS I think 🤔

Anyway I was more concerned for you, and the problems that you are having with Benepali!!

I do hope that you can get sorted out love and things settle down for you 😍

X

[Philjania in reply to PinkLamb]

I had the same issue, after two years with virtually no treatment because of fake liver results, Enbrel literally changed my life within a matter of weeks. Then after 3 months got switched to Benepali. In only a week after switching, things started to get worse to a point where I was back to where I was before starting Enbrel. I kicked off saying that I should not have been switched off a treatment that was working well even though Benepali is the “same”. It’s not. It’s Similar. Eventually went back to Enbrel only this time it had no effect. Tried three more biologics since and now on Tocilizumab. It’s slow progress and very hit and miss. Luckily I seem to avoid any major side effects apart from extreme fatigue.

[PinkLamb in reply to Philjania]

Hi Philjania,

I have now injected 3 times with Enbrel over the last 3 weeks, I am also on Predisolone steroids, so I'm guessing there helping, just keeping my fingers crossed that the enbrel will work again!! But who knows!!

I do hope that you get sorted, it's not easy is it?? Even though we try to be positive, it wears you down doesn't it??

I wish you all the very best

X

[NeonkittyUK in reply to Hels1989]

Oh gosh .. I have just seen this catching up on some missed messages and posts. Sorry to hear this and I hope it settles. Neither Enbrel or Humira did this to me but it sounds like it is a side effect. I do hope it settles and calms down. Early days yet Hels for a new med. Tell your rheumy of your side effects. I try eat foods that give some bulk such as bread, bananas, jacket potato, rather than make you looser like a lot of fruit and veggies, if I find myself with that problem. Hoping for calm soon. XX

[helixhelix]

I had three months of alternating diarrhoea and constipation, accompanied by an orchestra of wind instruments, when I started sulphasalazine. So relieved when it finally calmed down!

However I got it checked out to be sure no infection or other reason, so don’t suffer in silence - tell your rheumy.

I am totally stubborn, so was prepared to keep going especially as the sulpha was working. But we each have to weigh up positives & negatives ourselves and decide what is and isn’t acceptable.