Etanercept

[Em_tombs]

Hi everyone

I'm just wondering who's on Enbrel and how long have you been on it? I've been taking it for 17 years and just thought if there's anyone out there that's been taking it for the same amount of time or longer?

[Dogwhisperer]

I started in enbrel back in 2001 and had to switch a couple of years ago into cimzia, which didn't agree with me and then into ABATACEPT ... would prefer to be back on enbrel in all honesty

[Matilda7]

Wow! ..lots of questions.....do you live in the UK? Is it still working well for you? Do you inject every week? Have you had any problems with it?

[Em_tombs in reply to Matilda7]

Hi yeah I live in the uk, yeah it's still working for me not had a bad flare up for over 10 years mainly dealing with damaged joints etc now. I inject 2 times a week I mix it myself as i didn't get on with the pre filled syringes lol I've not had any major issues with it just worry more than anything

[Matilda7 in reply to Em_tombs]

What was the problem with the prefilled syringes? I get injection site reactions and feel pretty awful for a couple of days after the injection...twice a week wouldn't work for me at all!

[ginam in reply to Matilda7]

Are you allergic to latex? I had to switch from the pre-filled syringes to the 2x per week injection where you have to combine the powder with the diluent. The pre-filled comes with a latex covering over the needle which really isn't necessary. They could cap with just solid plastic. I actually prefer the mixing way because the injection does not burn like the pre-filled shot due to the preservative that they use in it. Also, you are receiving 1/2 the dose at a time whereas the pre-filled is all at once. Maybe you wouldn't feel so awful if twice a week.

[Em_tombs in reply to ginam]

@ginam no don't think it's the latex it's the preservative stings so bad I couldn't put up with that every week! Prefer mixing myself don't even feel the stuff going in if i inject it well do you sometimes get a lump or warm area where the injection was?

[Em_tombs in reply to Matilda7]

I think it was the preservative in the pre-filled just hurt to much, it use to make my eyes water with how much it stung! Must of been allergic to it or something, what kind of reaction do you get on the site of injection? I get a red raised bump which feels really warm but it's gone within 5 mins

[ginam in reply to Em_tombs]

Yes, the preservative in the pre-filled stung really bad. Plus I would get an itchy red rash from the latex. I don't get any raised bumps, just black and blue once in awhile. I'm so glad that the injection that needs mixing doesn't sting.

[farm123]

You must have been amongst the first. I was on Enbrel from 2003 to 2011 when its effects started to decline and had to change. When I first started it was a vial of powder with a syringe of fluid (think it was sterile water) and you had to mix it. Then I had prefilled syringes. Farm

[helenlw7]

I've been on it since 2006 so no where near as long as you!

[Gillian1163]

I was on it for about 10 years - now on rituximab

[juneann]

I did really well on Etanercept self inject for around three years and then it seemed to have less effect on the RA. Now on Rituximab which always concerns me with a progressive disease - where next? Good to hear you've been on Etanercept as long as you have I hope it continues for many more years.

[scorpiojack]

I've been on it since 24th Feb this year..and I feel really good on it. Had one flare up 3 weeks ago, but thankfully back to feeling good again. However, have been told I will eventually have to go on the cheaper biosimiliar Benepali..so I'm now a bit worried. Don't want to stop feeling this well!!

[Taffsmum]

Hi, I've been on enbrel for 14 years and I'm in remission. Just dreading my next rheumy appointment in two weeks as I have a feeling he will switch me to the bio similar drug. 😢

[Em_tombs in reply to Taffsmum]

Hopefully not if your still responding well with the Enbrel!

[Em_tombs]

Thanks for all your replies does anyone worry about any long term effects of these kind of drugs or not worry if it controls pain and inflammation.

I've been on Enbrel since I was 12 I defiantly think if it hadn't been for this drug I'd be in a much worse state so I'm grateful it's worked for so long but just worry about long term effects.

[Matilda7 in reply to Em_tombs]

Gosh, so you're only the age now that I was when diagnosed...29? I'm so glad they found something that works for you!

But I can see why you're worried about the long term, being so young. Have you tried experimenting with changing your diet to see if it would enable you to reduce your dose? Some foods make a difference to how much inflammation I have.

[Em_tombs in reply to Matilda7]

Yeah I'm nearly 29, diagnosed at 3 nothing really worked with helping the ra til Enbrel came out. I haven't tried much with diet to be honest I'm quite a picky eater lol I'm not sure what type of foods are inflammatory but my diet consist of a lot of dairy, carbs and tea I've been told to eat more oily fish but that's about it.

[Matilda7 in reply to Em_tombs]

The first thing I dropped was meat...only meant to do it for 2 weeks to see if it made any difference, and never ate it again and that was in 1982!

Sugar also is a problem for me...I vary in how strict I am depending on how my joints are. I've fought RA for almost 40 years and mostly, until fairly recently, without the help of drugs.

Do you have high CRP and ESR? They might well respond to diet changes. There was an interesting 'food hospital' programme a few years back which looked at this.

Yes, fish oils are the one thing with an evidence base and worth trying.

Lots of us find that changing our eating habits can help. Culprits are often meat, wheat, sugar and dairy, but it varies from person to person. It's something you have to experiment with and find out for yourself what helps.

If you cut out, perhaps, dairy for 2 weeks that should be long enough to know if it helps. Have fun!

[Em_tombs in reply to Matilda7]

Hi Matilda sorry haven’t replied for such a long time! Yeah I’m looking into my diet a lot more than I use to, trying to cut down on dairy and wheat products they do make me feel quite bloated. No haven’t had crp or est for a long time highest was crp 30 when I had a cold.

That’s great you can go drug free! Do you take things as and when you need it?

[diperriam in reply to Matilda7]

Hi Matilda, I am very interested in the effects of diet on my RA. I stopped meat many years ago but I now have low iron. I did try red meat last night but I really don’t like it. So maybe back to vegetables and fish.Are you still meat free and are you still not taking drugs? I am on Enbrel and it does seem to work.

Happy days from NZ

[farm123 in reply to Em_tombs]

I think I have got to the stage where 'now' is what counts and what happens long term is faced then. In time perhaps I will not think like that but I want to be able to things now and without meds I know it is not possible. Although the older biologics have been around for a while there is not a big amount of historic long term data available but the various ones I have used have been my lifesaver over the years and I get far fewer side effects on biologics than the DMARD group. Farm

[ginam]

I started in the beginning of Dec of 2016 and felt better in just 1 month of being on it. I had to stop for my knee replacement and could not wait to get back on it. It took a month again for it to kick in. My hands and tailbone that were flared up are pain free at the moment.