Benepali not working..,

[Roostermum]

Hi, I have been on Benepali on & off for two months now. Zero side effects for a while, then suddenly it changed for the worse. RA definitely not any better, in fact, I'd say I'm a bit worse... Anyone else experienced this?

[Witness2]

Afraid so. In fact I saw my Rheumatologist on Thursday and he's switched me back to Enbrel. My DAS was worse than for years and he said I looked like 'an old goat'! I can't say I experienced any side effects which he decided was more evidence of Benepali not working in my case. He says most of his patients have switched successfully. Meanwhile I am aching from head to toe!

I hope things improve for you. One thing, my Rheumatologist said that might be relevant to you too, was that it was good to have seen me early on (within the first 3 months) because he could make a case to the CCG confident that my deterioration was caused by the switch and not anything else.

I must say the deterioration has been creeping up on me and I wouldn't have been pleading for a switch just yet but my bloods and DAS show significant disease activity. So maybe best not to soldier on Roostermum and seek advice now.

[keeta in reply to Witness2]

I.v bin on it foe 4 months .thought it was working at first took the swelling down didn.t help the pain .then everywhere swelled up face feet around my middle and pain got worse .when the doc first said she was putting me on was embrel but that didn.t happen. But everything is now worse fatigue is awfull knees are worse .

[Witness2 in reply to keeta]

Don't put up with it Keeta! In my experience any Biologic should be working for you by now and fortunately we are allowed to switch to another - years ago if you 'failed' on one it was decreed that you couldn't try another but that decision was reversed.

I really hope your rheumatologist takes you seriously and if I were you I'd be pressing for an immediate appt. Would your GP help if you can't get one yourself?

Do take care.

[keeta in reply to Witness2]

Yes i think so .its funny how we just carry on till someone says .no thats not right.

Thank you .will make an app as soon as poss.

You have just said just what my daughter has been telling me .🤗xx

[Witness2 in reply to keeta]

Good for you, and your daughter! I hope you'll let us know how you get on. X

[keeta in reply to Witness2]

Will do .thank yiu x

[nanof8 in reply to Witness2]

I was doing pretty well on enbrel then I was switched to benopali my RA has got so bad since changing over I asked to be switched back but my rheumatologist refused and wants to try a new drug omuliant which I'm really unsure about

[Witness2 in reply to nanof8]

I don’t think your rheumatologist has the right to insist you take another drug if you don’t want to, but you do have the right to switch back to Enbrel from Benepali. The NRAS helpline will advise you.

Be firm and polite. Your rheumatologist will have to inform the Trust/CCG that there’s a deterioration in your condition for them to sanction the switch but that should be all. I hope you get this sorted out soon.

[nanof8 in reply to Witness2]

apparently my consultant put my case forward and it was declined because you can only have one try on it !! it's only when switched to benapali I declined and badly

[Witness2 in reply to nanof8]

I really believe you’re being misinformed, I suggest you phone the NRAS Helpline to see what they know. Good luck.

[nanof8 in reply to Witness2]

saw rhumatology consultant yesterday he admitted I've been declined to go back on enbrel because I was put on another drug olumiant bearing in mind I told him I didnt want to ho on this so called wonder drug to be told to try it if didnt work had put me forward to go back on enbrel

don't know what to do my decline is unbearably yet this is my consultants fault I'm at my wits end and now having steroids to try and help me

feeling so angry

[Witness2 in reply to nanof8]

I would urge you to call the NRAS helpline for advice. You are entitled to see any NHS rheumatologist you choose as long as they agree to take you on and you’re prepared to travel if necessary.

My understanding still is that you are permitted to try other biologics when one fails or, as in your case, correct me if It I’m wrong, you were taken off Enbrel and put on Benepali as a cost saving measure. This was presented to many patients as a No Choice thing when in fact it was supposed to be a choice we were given.

Time to make a big fuss. Say you believe the above, that you are being denied a drug that you can demonstrate from DAS scores worked for you (as long as that’s true) and go to your hospital’s PALS service to make a complaint if you have to go that far.

I believe NRAS can help you with all of this. Good luck! You have one life and you can’t live it feeling so unwell.