Ra and Benepali

[Davy123]

Hi everyone, due to start Benepali a biosimilar of Enbrel for Ra. Long story short, crapping myself worrying about side effects etc due to what I've read about biologics. Anyone have any views on Enbrel or Benepali. Thanks

[popsmith1874]

Hi I'm on Benepali and mtx and it's doing a great job on me and I'm getting back to near normal although I still get a lot off fatigue, but not as much pain as I used to get and no side effects as I drink loads off water

[Davy123 in reply to popsmith1874]

Hi thanks for your reply, just hate the thought of injecting strong drugs. Know it has to be done though, in lot of pain and hands are quite deformed. Cheers

[James53]

Hi Davy

I am on Benepali - started 16 weeks ago. No real side effects and you get used to doing injections quickly. Real benefit on this med. try not to worry. All the best.

[Davy123 in reply to James53]

Thanks for reply James 53, as I said to pop smith 1874, it's pretty strong stuff. Cheers

[Runrig01]

I'm only on Benepali for 4 weeks, with no side effects or reactions. I have AS and noticed improvement in stiffness after 4 hrs. Getting a glimpse of the only me, no longer feel I'm moving through treacle.

Try not to worry re side effects, a research paper by NASS shows AS patients are not at an increased risk of cancer, I'm sure that would be similar for RA. Uncontrolled inflammation Aline increased risk of cancer, so it's important to control it.

Here is a link if interested

ncbi.nlm.nih.gov/m/pubmed/2...

[Davy123 in reply to Runrig01]

Thanks Runrig 01, been putting biologics off for a long time now, probably stupid I know. Good to talk with people who have been on them. Thanks

[Mhairi54]

I've been on Benepali for 3 months now and, pain wise it's worked wonders for me. Still struggle a bit with fatigue and only side effect I get is headaches, but figure it's the lesser of the two evils!

[Davy123 in reply to Mhairi54]

Thanks Mhairi 54, the more positive replies help to make me more confident in taking the injections. Thanks

[Witness2]

You're right to be wary about what you put in your body but my experience of over 8 years on Enbrel is that it's the only drug that has ever brought me remission. I have accepted the headaches I get as a trade off for the best joint health I've known since my RA started 36 years ago. I didn't take meds for anything before then so the thought of all those foul toxins worried me too. It's a constant risk v benefit decision that only you can come to terms with. For me it's been worth it. I just wish the Enbrel didn't clobber my immune system quite so much. I hope you respond really well.

[Simba1992 in reply to Witness2]

Choosing hard meds is not an easy decision to make and there is no right straight forward way to go. It's always a individual decision and a thorough weighing of the risks and benefits and a thorough understanding of the treatment options and risks. Unfortunately the RA patient is seldom offered unbiased help and support in this decision making process.😕

[Davy123 in reply to Simba1992]

Thanks for the reply Simba1992, that's the problem with these type of drugs, some have no problem with them and others have a bad time.

[Simba1992 in reply to Davy123]

Yes, and this is why encouraging others to go a certain path with meds is especially dubious since the effect of the med that has been ok for you, may cause irreversible adverse effects in others.😕

[Davy123 in reply to Witness2]

Thanks for your reply witness2. Maybe I should have gone on biologics earlier, wouldn't have had as much hand deformities maybe.

[Witness2 in reply to Davy123]

I share that doubt too Davy as I took 10 years off drugs only to end up with badly deformed hands. As I was reminded on this forum recently, the 10 year drug holiday may have helped in other ways but the trouble is we never know.

[Simba1992 in reply to Witness2]

But we can always follow the process just as with meds. Meds don't always work and followup is just as essential. So many of us, as we have seen on this forum, are also unable to tolerate the meds and go through a long period of suffering without results. This is why in my opinion all treatment options should be considered and tried, especially the nontoxic ones, which does not mean that meds should not be used but should if needed be part of the more holistic, individual treatment plan.

[Mandalou]

Over a year on Enbrel , now Benepali and zero side effects just ability to work and function with minimal pain and swelling.

So pleased to have met the criteria for Biologics.

[Davy123 in reply to Mandalou]

Hi Mandalou, thanks for your reply, glad to hear it's been ok for you. Hope my tretatment goes ok as well.