helixhelix7 months ago

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 helixhelix7 months ago

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.

Reply (0)Report

helixhelix in reply to Gitaga7 months ago

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

Reply (0)Report

Gitaga in reply to helixhelix7 months ago

I heard so. 😏

Reply (0)Report

oldtimer2 in reply to Gitaga7 months ago

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.

Reply (2)Report

Gitaga in reply to oldtimer27 months ago

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

Reply (0)Report

Knit127 months ago

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 Knit127 months ago

Thank you

Reply (0)Report

Leics7 months ago

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 Leics7 months ago

Thank you

Reply (0)Report

tyncwmmarchhywel7 months ago

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 tyncwmmarchhywel7 months ago

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.

Reply (1)Report

Blodynhaul7 months ago

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 Blodynhaul7 months ago

Thank you. I will certainly heed your advice.

Reply (0)Report

Jacey157 months ago

adalimumab took 5 months to work for me

Gitaga in reply to Jacey157 months ago

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

Thank you

Reply (0)Report

Hannah-NRASPartner7 months ago

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 helpline@nras.org.uk

Best wishes,

Hannah - NRAS Information and support coordinator.

Gitaga in reply to Hannah-NRAS7 months ago

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.

Reply (0)Report