adalimubab

[Barrcroom]

I was diagnosed with RA. Twenty years ago. Managed fine after settling on 15mg of methotrexate until about two years ago. Constant flares since then and I am currently on 25mg of methotrexate and due to finish my first 6 months on Adalimubab coming Thursday. (40mg every 2 weeks ). I have also been on varying doses of steroids both injection and oral for most of the year. Currently on 7.5mg daily. I feel the Adalimubab is having very little effect and every time steroid is weaned done the flare starts. Has anyone had a similar experience and what would be the next biologic to be tried.

I don’t post much but I follow regularly. Thanks

[nanny_bee71]

I have been MTX (have been for about 5 years) plus sulfasalazine Was put on Adalimumab as I was getting flares and other issues but it had no effect after 9 months. After a telephone appointment with Rheumy I have gradually come off all 3 meds in an effort to find out what will or won't work. The only thing that has ever had any effect on me was when they put me on prednisolone (about 6 years ago) However for whatever reason there is a reluctance to put me back on. Currently suffering stiffness, pain and all the other symptoms that were occurring when I was on the meds - I am due for (hopefully) a face to face with rheumy soon!!! but in the meantime I am taking NSAIDS to help me carry on. The biggest improvement of not being on any of the meds, however, is a clearer mind and less depression

[Bookworm55 in reply to nanny_bee71]

Yes prednisolone is the only thing that has worked for me recently. I’ve had a few short 4 week tapering courses in the last year. I do try to avoid it long term as I know it has side effects but tbh although I take NSAIDs (naproxen) these have a limited effect so I’m wondering whether to ask for a long term low dose of steroid as others on here seem to be on.

[Barrcroom in reply to Bookworm55]

Yes. My rheumatologist said he couldn’t leave me on a dose of 10 mg pred long term. The worst part is waiting to see if your new drug works. Thanks

[Bookworm55 in reply to Barrcroom]

Yes the time delay in seeing a drug’s effectiveness is difficult and time consuming when all you want is to feel better. I understand the caution over steroids but then long-term use of NSAIDs is not really recommended either! My naproxen always comes with the warning - ‘try to avoid regular use’ (whatever that means!) and I know it raises blood pressure.

[janmary]

I was on Methotrexate for 11 years with occasional steroid injections. A long story but had to stop M/X injections suddenly - had tried additional Etaneracept with no effect - After a subsequent awful generalised flare Im now on Rituximab infusions which seem to be working better than anything else did. Touch wood .

[Barrcroom in reply to janmary]

Thanks. That sounds promising. Best of luck.

[Bookworm55]

Adalimubab doesn’t seem to be working for me either. Have been on it since last June but no discernible effect . Rheum appointment in Oct recognised this - hence I’m to have X-rays and another appointment with Rheumatologist in January. Also on sulfasalazine and Leflunomide. I have also had a few short courses of steroids in that time which is the only drug that seems to have had any effect.

[Barrcroom in reply to Bookworm55]

Yes that’s exactly how I feel. Had a steroid injection before a recent holiday and had great relief for about 6 weeks. Sure all we can do is keep trying. Thanks

[Anniebl24]

I had no success in it either. Tried for a year. Now on JAKs which work for me.

[Barrcroom in reply to Anniebl24]

Thanks Will ask about JAKs

[Angjoplin]

Hi. I've had RA for 20 years myself. I don't mean to worry you but those constant flares could be doing damage to your bones. Don't wait for rhuemy team to sort it out, push now for a change in drugs. (I wish I had being more pushy.) They will probably try you on two different biologics and then change you to jaks.

[Barrcroom in reply to Angjoplin]

Thanks. I Will push for a change now because I am losing faith.

[linmar]

For me, the adalimumab and methotrexate 10 mg tabs have worked for the last 12 years with no fusing or pain. Long may it continue. 17 years prior to that, I started on Sulphasalazine and diclofenac sodium. During this time, I was in pain and got fused joints in wrists, upper foot and toes, and left shoulder. I had a sudden onset of rheumatoid in all joints for some unknown reason at 44. No other family member has had it before me. I'm so happy to be pain-free and hope all you ladies find pain-free meds.

[Barrcroom in reply to linmar]

Thanks. Can you remember how long it took for the Adalimubab to start working?

[linmar in reply to Barrcroom]

For me, about a fortnight. I went from Crp 29 to Crp 5. I could bend my knees and did a little jog down the street when it was dark and I couldn't be seen. ☺️.

[Barrcroom in reply to linmar]

Thanks. I’m on it six months but no real improvement. Ah well.

[Akaka]

Hi, I started on Adalimumab in June and have found no real difference, I’ve since had 2 lots of steroid jabs but they are lasting a shorter time and I’m flaring again now. Also on 10mg methotrexate after coming off Sulfasalazine. I’ve still got 4 injections left and this last flare is the worst I’ve had for a while! I have felt mentally much better since coming off Sulfasalazine. I hope they change biologics before too long.

[Barrcroom in reply to Akaka]

Yeah. The worst part is waiting to see if it will work. Then you don’t want to give up too early. Catch 22. Thanks

[Blodynhaul]

Hi Barrcroom,

Sorry to hear of your issue. I was on MTX for over 13 years (periods of 20mg/w, but largely maintenance dose of 10mg/w), then switched to Leflunamide (LEF) for another 7 years after MTX poisoned my body & constant nausea for 2 years. LEF worked for me until it stopped working for some reason beginning of 2021. My RA went beserk, crazy inflammation & horrendous pain all over for the whole year. Complete invalid. During 2021, the rheumy first waited to see in the LEF started working again, but no chance of that, got worse and worse. Then Jun 2021 put me on Adalimumab biologic - but it didn't do a thing. After 3 months on it, the rheumy wisely did a blood test & showed I was making antibodies against the Adalimumab - so that's why it wasn't working. It's worth asking your rheumy to do the same - at least then can rule it out and try something else!

It then wasn't till December 2021 that the rheumy tried what she said was the last thing to try - a JAK-inhibitor Filgotinib, which was newly approved (though of course comes with high risks of nasties as do other JAKs & all the RA drugs really). BUT - it was a Miracle drug for me & is controlling my inflammation & pain very well. Like a switching off part of the immune system. But I do have a lot of debilitating other chronic issues now that came on after starting it - some of which I think are due to the drug. But - so grateful to be able to move again & not live in constant agony (though was so ill in 2021 that nothing like I was before that). So - I would ask the rheumy about JAK-inhibitors.

It's not good to be on steroids full time (prednisolone) due to other issues they can cause, though they can be great over the short term just for relief. They are only dealing with some inflammation - not turning down/off the auto-immune disease itself. Not meaning to sound like an expert - I'm not! Just what I know from experience.

Wishing you all the best.