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Biologics Feedback, please:)

Hello!

Due to side effects, I'm scaling back on Methotrexate and my rheumy doc is going to add Humira, Enbrel or Remicade. I have an appointment with him next week to discuss the options.

Would love to hear your experiences with these drugs, both positive and negative. I also take plaquenil and meloxicam.

Thanks everyone!

Maddi

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Hi maddon128 I have been on biologics since 2004 on every different 1 found Engel to be the best hope this helps

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Thank you!

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Had all of the above and were all fine but for me they wore off. But today saw Rheumy and my inflammation numbers have never been so good .Ivw been on tocizilumab for 4 months. Really helping. All the other drugs are brilliant too and I know many people taking these and got their life back. Good luck x

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Thanks!

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Have had Enbrel and Humira. Enbrel worked that same evening I had the first injection and lasted five weeks then nosedived badly. Humira did nothing in six months! We are all different and no reason to think they won't work for you. I have been on Rituximab infusions since 2014 and they have been the most effective for getting rid of all RA inflammation and giving me back a great deal of mobility and movement. Good luck.

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Great info, thanks!

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I've been on Enbrel, give or take a few months, for 8 years and I dread to think of life without it. I'm one of the fortunate 27% for whom biologics work and I hope you will be too.

Initially I had injection site itching for 3 months and I wish someone had told me it could stop. I nearly gave up at that point. But it did stop and then after about 6 months I got sinus (?) headaches but now I only get them if I overdo things. I suspect they were also caused by tension in my fused neck and shoulders due to my work. I guess we all get different reactions but I've heard that sinus problems are common to many.

Nonetheless, Enbrel has improved my quality of life immeasurably. When I was switched to Benepali everything started to deteriorate but I think I was just unlucky. Others have switched successfully I'm told. I'm back on Enbrel now and my inflammation is back under control.

Cimzia gave me the 6 day headache from hell, Toxilbumab -can't remember how to spell it - by infusion didn't work and I felt really ill.

That's probably far too much info but I hope some of it helps!

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That's exactly the info I'm looking for! Thanks you!

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Hi

Like you I had to come off methotrexate. Been on Benepali now for 11 months with great success.

Mobility much improved.

Pain reduced significantly.

Limited side effects - itching, runny nose, a few headaches but not as bad as when on MTX.

Hope you get benefit too

Cheers

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Thank you, is benepali like a generic of Enbrel?

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Benepali is a bio similar to Enbrel. As far as I know the NHS have instructed all Rheumys to use Benepali instead of Enbrel to reduce costs. If on Enbrel people are being changed unless clinically unsuitable

Cheers

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To Maddi. I have posted several times that Humira was a silver bullet for me. All of my symptoms clearing within a few [2-3] weeks. No swelling, no pain, and my severe anaemia disappeared at the same time.

HTH?

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A silver bullet would be nice:)! Glad to hear you've had success and are feeling good!!

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ENBREL RULES!...at least it did for a few months with me. I noticed an improvement 24 hours after my first injection. Within a week I felt like a new man....well almost. Unfortunately I had to stop taking it after a few months due to complications caused by another chronic health condition.

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I noticed after 2 day’s that Enbrel worked , amazing drug but unfortunately after 4 years it stopped working , but those 4 years were brilliant

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4 years is a good stretch...what did you end up switching to after Enbrel?

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I have gone onto Ritixumab , thinks that’s how you spell it.

It’s good but not as good as Enbrel

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Etanercept ( Enbrel) or (Benepali) has been very good for me with no side effects other than low blood counts which would be expected with an immunosuppressant.

Slight injection site reaction for the first few weeks but I certainly don't get that now after nearly two years.

What I love is the fact I can live normally it isn't intrusive into my daily life. I inject once a week and can still drink alcohol if I wish to.

Whereas the traditional DMARDS all affected my liver enzymes badly Etanercept does not.

Good luck to you on your journey with Biologics.

Mx

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Thank you!!

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Was on Methotrexate for three years then had to come off it as was so unwell. Been on Leflunomide for over two years but have stopped taking it as have had terrible night sweats and fatigue for months. Stopped it two weeks ago and definitely feel better so will have to contact my Rheumy nurse and see what I get next

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I'm on enbrel, I felt it start to work the next day. Was in remission 12weeks later and still am. Apart from one flare 2015 haven't needed any pain relief. Started it November 2012. No side effects at all. Was really, really bad before I started it. Could hardly manage a few steps before my legs started to give way. I call it my magic potion. It may sting a little when I inject, but boy it's worth that little discomfort for the benefit. It gave me my life back.....it gave me back to me. Good luck with whatever you decided to use. It xx

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I was on Humira last year and had to stop for a variety of reasons, but it was an absolute game changer. It eliminated all of my RA symptoms, and I was lucky enough not to experience any side effects! Hoping to get back on it, or something similar, quite soon.

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