Amgevita

[Gitaga]

Hi

I'm on Amgevita (40mg fortnightly) since May this year.

I also take Rheumalef 20mg daily.

I don't see any improvement in my condition since the start of Amgevita.

On the contrary I feel that the disease is progressing more rapidly, after having started with Amgevita.

I did mention this to my doc after 1 month of starting Amgevita. My whole body was absolutely tender and painful. So she diagnosed me with fibromialga and prescribed Nurika. She did say that it was impossible that Amgevita could have the opposite effect.

There was some relief after taking the Nurika, but the immobility and pain continued. I have stopped taking the Nurika since.

According to the last blood report, my inflammation levels are within normal range.

Unfortunately, I had to restart with prednisone just for relief. I am able to do simple tasks again...

I'm due to see my Doc in October.

Has anyone else had a similar experience or outcome with Amgevita or any other Biological therapy?

Kindly share your experiences and or thoughts

Thanks guys!!!

[helixhelix]

earlier this year Enbrel stopped workimg for me, so I was swapped to Amgevita. It did nothing! And my flare comtinued to get worse so went back on steroids.

After 12 weeks we stopped it, and I am now trying Tocilizumab.

[Gitaga in reply to helixhelix]

THANKS.

Glad to know that I'm not alone.

I M hoping that I don't have do biologic hopping.

Maybe cortisone is the way to go.

[helixhelix in reply to Gitaga]

i’m hoping to get off it as soon as possible!! Cortisone is evil in my book…

[Gitaga in reply to helixhelix]

I heard so. 😏

[oldtimer2 in reply to Gitaga]

Steroids are excellent for short term use to control the inflammation. But they do not tackle the immune overactivity that is causing it. It just damps everything down.

If it means 'hopping' between biological treatments then that's what we need to do, in order to find the correct pathway. Unfortunately it isn't (yet) possible to identify which part of our immune system is being overactive, which is why it's trial and error.

It takes patience and can seem endless sometimes, but finding the right treatment is life-changing.

[Gitaga in reply to oldtimer2]

Thank you. I know cortisone is really not a good option. I try not to take is regularly.

[Knit12]

Yes, Amgevita didn’t work for me. I emailed my rheumatology team and they arranged for an earlier appointment and my medication was changed. There are still quite a few for you to try. I found that only drug no 9 in 3 years has worked for me, and I can successfully say that after a year. Contact your rheumatology team and do not allow it to continue getting worse

[Gitaga in reply to Knit12]

Thank you

[Leics]

I would definitely contact your team for an earlier appointment. I had a similar outcome with a JAK everyday I took the pill (I was only on a half dose) the pain increased and I could only stand taking it for a month. Eventually my husband made me stop taking it and after a week I was sooo much better but still had inflammation so I contacted my team and reluctantly they changed it. So many to choose from but don’t rely on steroids if you can. I hope you get a positive outcome but don’t suffer in silence.

[Gitaga in reply to Leics]

Thank you

[tyncwmmarchhywel]

Hi Gitaga, had two biological that made me very ill and in hospital, one being Embril and the other methotrexit, I am n ow only able to take 5mg Predislone, some good days some bad. Good luck.

[Gitaga in reply to tyncwmmarchhywel]

Oh dear! I sincerely hope that you will find something that will work for you. Please consider the replies on my post , they are very helpful.

[Blodynhaul]

HI Gitaga, sorry to hear of your situation. My RA was completely out of control throughout last year & in a terrible state with so much agony and debilitation. Leflunamide had stopped working in about January last year and it wasn't till July I was put on Adalimumab/Amgevita with very high hopes, but 3 months later I'd gone even worse in a terrible state. The Rheumatologist, wisely, actioned an antibody test and found my body was creating antibodies against the Amgevita working - so it was pointless taking it & stopped it (then started on a Jak-inhibitor - Filgotinib/Jyseleca not till December last year - and thank goodness it has helped enormously). So, not for me to tell you what to do, but if I was you I'd ask your Rheumy about an antibody test for it. You'll at least then know whether it is likely to do anything or not at all. They say within 3 months you should have improvement otherwise.... so should be improving by now. Good Luck!

[Gitaga in reply to Blodynhaul]

Thank you. I will certainly heed your advice.

[Jacey15]

adalimumab took 5 months to work for me

[Gitaga in reply to Jacey15]

OK good to know. I do have an appointment in October. So I would've given it enough time.

Thank you

[Hannah-NRAS]

Hi Gitaga,

Sorry to hear of your situation. Unfortunately, the treatments used for managing RA are not quick fixes and on average they take up to 12 weeks to kick in and for you to feel relief. That said, if at the 3 month mark you still feel that the Amgevita is not having any affect then you should raise this with your rheumatology team so they can look at swapping you onto something else.

And of course, if your situation is continually worsening now, keep on at them to provide you support in this interim period. Hopefully the steroids will take the edge off while the Amgevita does its work.

With regards to the diagnosis of fibromyalgia you may want to check out the following resources for information and support:

nhs.uk/conditions/fibromyal...

versusarthritis.org/about-a...

fibromyalgiauk.co.uk/

healthunlocked.com/fibromya...

It may be the case that your RA is well controlled but that the fibromyalgia is the area which is causing the issues with your health.

I hope you find this information useful and wish you all the best. Should you require any additional information or support please contact our helpline on 0800 298 7650 (Mon-Fri, 9.30am-4.30pm) or email us at [e-mail]

Best wishes,

Hannah - NRAS Information and support coordinator.

[Gitaga in reply to Hannah-NRAS]

Thank you.

I appreciate your detailed response

It's more or less what my doctor had said.

I have checked out the links.

It does help with my understanding of Fibromyalgia.