Hi I'm New here

[Pearlgeorge]

I've had rhumatoid arthritis for 35 years now I'm on methotrexate and Benepali injections .I was on enbrel for 10 years without any problems at all i was asked to go on benepali 18months ago i agreed to only because i was told they would put me back on enbrel if it didnt suit me ,well since ive been on benepali ive had more infections chest ,sinus, ear and urine and now on my 5th urine infection since last November also I've had several flares one last week in my right shoulder into my chest I just wondered if there is anybody else that has had any experiences with benepali

[allanah]

Hello. Nice to see you here. Lovely photo. Sorry I havent had this drug but just wanted to say hi x

[Tennismad in reply to allanah]

Hi to you too. I haven’t heard of anyone so I am reluctant to try .

Have a good weekend even if in lockdown x

[allanah in reply to Tennismad]

Think a lot of folks on here on benepali, they will advise more x

[allanah in reply to Tennismad]

Different name from above??

[Tennismad in reply to allanah]

Thanks my name on here is Tennismad as I enjoy tennis when I can.

Thank you speak again I hope

[Hidden]

Hi . Fab photo.

I don’t understand why they changed your medication if it was working and no side effects. If you have no quality of life with a drug why does your Rheumy insist you continue. I really feel for you I have had failures with medication. It’s a fine balance between side effects and a drug that works. I’ve just come off methotrexate after 4 years as I was living in a zombie state. I want to participate in life not just exist so I will keep trying other drugs. Just because a drug works for one doesn’t mean it will work for another. Rheumatologist don’t always get it right so it’s important you let them know if your not happy or feel it’s not working. Me I would ring my clinic for a chat.

Lovely forum here you will get a lot of support I have.

[Pearlgeorge in reply to Hidden]

They wanted me to change because benepali is cheaper than enbrel I have already told my consultant how I feel and I spoke to the rhumatology nurse on Tuesday after I had the flare in my chest she had a word with my consultant and i was told to increase my naproxen to 3 a day and take paracetamol every 4 hours because of this virus there was nothing else they could do

[Hidden in reply to Pearlgeorge]

I’m so sorry your going through this. Saving money 🙄 this isn’t right . Hope things get better for you

[Barrister]

I was on Enbrel for a couple of years then when I moved, the hospital I was sent to only uses Benepali rather than Enbrel so I had no choice but to change. It’s taken 2 years and increasing doses of methotrexate added to the Benepali for me to get good results. But I haven’t had any problems with infections apart from one UTI and one chest infection when I had flu.

Clemmie

[helixhelix]

There have been a few people who have been switched, and it hasn’t worked well and they have insisted on being switched back. Sorry, but I can’t remember who!

Benepali is the most commonly used biologic so there are a lot of posts about it - use the search box top right and you’ll find hundreds!

[charisma]

Just saying welcome, Pearlgeorge! Someone prescribed the same drug will soon respond.

[Mmrr]

Welcome and do chase up your rheumatologist with the issues you are having.

[Billybongos]

Hello I'm on benapali and methotrexate and have found it has much improved my ra yes at times it still flares but nothing like it used to I've also got asthma and it hasnt made that worse but smoking again has it can also take a while to work hope this helps and keep your chin up xx

[springcross]

Hi Pearlgeorge. Welcome to the forum. What a nightmare you've been having. Hope you're sorted soon.

[Biofreak]

Hi Pearlgeorge. It isn't right to change your medication especially if it worked for you. I would be really angry and I would write down everything that you've suffered with after your medication was changed. If you don't get what you want I would make a complaint. Telling you to take Naproxen and paracetamol isn't any kind of long term solution as Naproxen has implications if you have to take it long term. I know we are in a strange situation at the moment when it comes to consultations face to face but I would definitely make my feelings known in writing and hope that they prescribe Enbrel again if it worked for you. Good luck.

[Pearlgeorge in reply to Biofreak]

I wish I had made notes from the beginning but I started writing it down from last October when I had a nodgule removed from under my left foot since then I have had 5 uti and chest problems the last 2 uti I've had my doctor just sent a prescription straight to the chemist so i didnt have thhe chance to speak to her about it

[Biofreak in reply to Pearlgeorge]

Really feel for you. It's not right. Keep on at them. I think I've been lucky with my rheumatology department. They are very good and are always willing to listen. Don't let it drop. It's a nightmare when your meds don't work.

[Maggsie]

Hi, I went through the same thing a couple of years ago. I was asked to switch from Enbrel to Benepali, which I did. Tried it for 16 weeks and it wasn't working, went back on enbrel but it didn't work as well as before. Now 27 months on I'm still struggling with RA and have major joint erosion problems. Still waiting for another biologic.

[Pearlgeorge in reply to Maggsie]

Hi why is it taking so long to be put on another biologic?

[Maggsie in reply to Pearlgeorge]

It's a combination of consultants retiring/leaving and having ops scheduled. I did have one round of rituximab last June but not managed to get anything since. Thank God for pred and Mtx.

[fizbom]

Beautiful flowers, yes I had lots of flares and unwell on Benapali and they did put me back on enbrel after I showed them a photograph of hands very red very swollen so if you're not doing well with the change ask to go back on Enbrel xxx stay safe

[Nyreedw]

There are quite a lot where people have changed to a biosimilar and it doesn't work as well. I'm on Humira and was told I would have to change to Imraldi, I did my research and put my case for refusing the change. Under NICE guidelines you can't be forced to change,you have to agree. It turns out all that were changed to Imraldi,at my clinic, have all had problems and been put back on Humira. The saving on biosimilars are roughly £70 a month not the hundreds some clinics tried to claim. People who use biosimilars as first time meds usually respond well, it's people on original ones who don't x

[Pearlgeorge in reply to Nyreedw]

Your very wise I wish I had researched it ,I trusted them when I was told they would put me back on enbrel if benepali didn't work I feel x

[Chrissycl]

I was on Enbrel then changed to benipali it didn't work well for me so I was changed to Baricitinib a biological in tablet form, its took a while but now its working well for me.