Back to Embrel: Hi everyone. I Was changed to Benepali... - NRAS

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Backchat57
Backchat57

Hi everyone. I Was changed to Benepali about 18 months ago after 15 successful years of being on Embrel and sulphasalazine. On benepali I have deteriorated to the point of having to have steroid injections and tablets on a fairly regular basis and am still getting severe flare ups so it is quite clearly not working as well despite them so doubling my sulphasalazine dose. My consultant has now agreed to request funding for me to go back onto Embrel. This was now four weeks since the request does anyone have any experience of how long it takes and also did they agree to it? Anyone out there who has been moved back onto Embrel and if it was still as effective as the previous time ?

13 Replies
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Hi I'm in the same position as I was on Benepali and am waiting to go on Humira I've been waiting 2 weeks and have not heard anything yet but I think it will be a month or 2 by the time the health at home nurse comes again to show how to inject, then getting the drug delivered

Hi I was in the same position benepali made me worse, I’m now back on enbrel 3 weeks in but it seems to be one flare after another at the minute hope it kicks back in soon also the fatigue and depression has been awful to the point of going to docs about it. Think it’s awful that people in nice can make a decision about our health without talking to us first I told my specialist nurse that in all the time on enbrel never contacted them but on benepali it was every other week just goes to show the cheap option doesn’t always work

I'm suppose to be switching to a bio similar drug in the near future. I'm going to refuse, refuse and refuse. Enbrel took me straight into remission over five years ago.

I hope you get back onto enbrel very soon and things improve. xx

wishbone
wishbone
in reply to Paula-C

Someone I know refused to change from enbrel to benepali. He said they tried to persuade him to change at first, but didn't keep it up for long.

Seems like you'll be ok providing you stick to your guns.

Good luck

Paula-C
Paula-C
in reply to wishbone

Thank you wishbone for replying.

I have been told by both Arthritis Research and one of the pharmacist at Health Care At Home that I can just refuse. I have typed up notes detailing why I don't want to switch and Nras and Arthritis Research helplines both said I have very valid reasons why, it's not as if I'm refusing without saying why. I dread the mail coming everyday I case 'The Letter' arrives telling me they want to switch. x

wishbone
wishbone
in reply to Paula-C

Power To The People!........ V:-)

My switch back to enbrel only took a week or so but I did make a pest of myself by ringing every other day to check whether it had been sorted. Keep pushing them as it's worth it to get back to a drug that actually works.

Hi I was switched from Enbrel to Benepali when they first brought it in. Had unusual side effect and didnt feel it was controlling RA as good. I was changed back and it only took about a fortnight. Keep on at them, you shouldnt have to suffer to get back on something that agreed with you, for the sake of money. Having RA is bad enough as it is.

Backchat57
Backchat57
in reply to Chezza56

Thank you for your support I’ve rung again and left another message as I’ve been waiting now for four weeks for CCG approval to go back on the Embrel. It is impossible to even get an appointment with the rheumatologist so have asked he rings me and I am going to take myself off the double dose of sulphasalazine they tried to improve things with as it has not improved my RA and has led to three courses of antibiotics for various infections and three root canal treatments !

It sounds a nitemare, Ive got Bells Palsy for the second time on horrible large dose of steroids and acloviar tablets.and my Sons getting married on Saturday. Its not as bad as the first bout I had so wondering if its stress. These things are certainly sent too try us !!I hope they sort it out for you really soon.

Hi Backchat57, I think Paula-C as got the right idea you've got to fight tooth and nail to stay or in your case get back onto Enbrel, I fought to stay on it 18 months ago and I'm still on it, some may want to do what I'm doing and that is keep a copy of your regular blood tests, the blood test is a record of how active your RA is so if you've got a record of your tests and at some stage they force you to come off Enbrel, and then your condition worsens I'm fairly certain it will give you a reference point to when and why this has happened, admittedly you may need a helpful and friendly GP receptionist like I have to print them off, but if you show an interest in your health I can't see why they wont print them for you, I have a blood test for RA medication once a month so it was just 12 sheets of paper for the previous year no big deal, I'm convinced if the unthinkable happens and I come off Enbrel a pattern will emerge and it will show the affect of taking me off it, anyway good luck and stick up for yourself because the only reason they take you off a drug that's working is simply money.

So this is the latest. My consultant who is great rang me after having put my case to the ccg to go back on Embrel as it worked so brilliantly for 15 years. They have replied saying I can go back on Embrel if the hospital or myself foots the bill but they will not fund it. They have said I can go on Humira so that is what I have decided to do as it seems very similar to Embrel and quite honestly I have no other option so fingers crossed I get it soon and it is effective.

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