Adalimumab/Idorio: Hello, Anyone else use this... - NRAS

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Adalimumab/Idorio

Lizzyear profile image
24 Replies

Hello,

Anyone else use this medication? I’m 6 weeks in, can’t say I’ve noticed any change except I just generally don’t feel very well. My hands, feet and ankles are still really painful.

Would love to hear how you have got on with it.

Thank you for reading my post.

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Lizzyear profile image
Lizzyear
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24 Replies
Lolabridge profile image
Lolabridge

Hello Lizzyear.

I’m on Imraldi (Adalimumab) that I started on 7th Feb and have now had 6 doses. Like you I was also hoping for a better response by now. I had a telephone appointment with the biologic nurse last week and she also thought there should be more improvement by now. My consultant is back from holiday tomorrow and she is going to discuss my situation with him.

I’m in a bad way too and having to take cocodamol, which can create its own problems.

So I do understand your disappointment with the drug so far.

I’m expecting to be told to give it more time so will ask for more Prednisolone to help me cope with the increasing pain and lack of mobility. My hands are now so swollen and tender I can hardly use them.

I hate this bl***y disease! 😢

Blodynhaul profile image
Blodynhaul in reply to Lolabridge

Hi Lola, as I said above to Lizz, I went onto Adalimumab last July in a terrible state with very active RA (after Leflunamide stopped working). Was on Adalimumab 3 months with not a stitch of improvement only to then find after a blood test that I was producing antibodies against it. If I was you I'd ask your Rheumy if you could have an antibody test for it, as otherwise it's wasting time and your health on waiting for it to work, though they seem to leave you for 3 months on it to be sure it's not working. But worth an ask! Good news is now on a Jak & doing better with the RA :) Good Luck!

Lolabridge profile image
Lolabridge in reply to Blodynhaul

I’ve spoken to my consultant today and he agreed Imraldi as mono therapy isn’t working for me. He is putting me back on Rituximab which we know has worked well for me in the past. I hope it will again 🤞🏻

Blodynhaul profile image
Blodynhaul in reply to Lolabridge

Great to hear that Lola. Any reason why you came off Rituximab before if it was working well? Go Well :)

Lolabridge profile image
Lolabridge in reply to Blodynhaul

My consultant was worried about the depletion of my B cells. He wanted to try something else which would be less immune suppressing and give my immune system a chance to recover. RTX stays in the body for a long time whereas Imraldi does not. I think the BSR advised consultants early in the pandemic to get their patients off RTX wherever possible because of the high risk of not surviving Covid. Hopefully the antivirals have reduced the risk!

Blodynhaul profile image
Blodynhaul in reply to Lolabridge

Thanks so much Lola for the interesting explanation. really hope it can work well in every way for you again then....Yes ,hopefully the Covid side of things in a better place too.. Go Well!

Birthdaygirl profile image
Birthdaygirl

HiSorry to hear that you are suffering. Your situation with Adulimumab sounds familiar. After 7 years Enbrel failed me and I was given imraldi on 31 December 2021. I have had no positive effects from Adulimumab in fact I am much worse. Nurses just say wait at least twelve weeks and keep taking pain relief which I did but I can hardly move and feet and hands very swollen and other side effects now mean the hospital cancelled the prescription and I have stopped . I have also had three depo medrones since November. Never had anything like this sort of trouble on Enbrel. It’s been difficult getting the nurses and doctors to believe the pain as I have a CRP of 1! Fortunately a scan of wrists show major damage!

I would encourage you to keep telling the rheumy team you are in trouble. I’ve suffered more than I should to the point I don’t know how I am going to get shoes on my feet for the next appointment this week They’ve gone from size 6 to 9. Thanks for sharing your situation.

I wish you well

BG x

Blodynhaul profile image
Blodynhaul in reply to Birthdaygirl

I was exactly the same as you on Adalimumab and in a hell of a state living in agony and unable to literally lift a finger when I started on it. 3 months later no better. Please seem my answers above about having a blood test for antibodies, but as you say they do seem to make you wait 12 weeks... Worth asking. Good Luck & feel for you .

Birthdaygirl profile image
Birthdaygirl in reply to Blodynhaul

HI BlodynhaulThank you for advice. I will have ANA results this week and am hoping for a way forward from this situation. I have asked twice for this specific test. It helps tons to know that others are or have been in the same hole. Currently can’t walk without tri walker. Losing muscle strength all the time. Thank goodness we have this website and can share info. Take care BG

Blodynhaul profile image
Blodynhaul in reply to Birthdaygirl

Truly hope things can be sorted out & you will improve very soon. Good Luck. Totally agree - it's so helpful being on this forum, not just in gaining information & help, but in not feeling alone with it all. You take care too - & really hope you can post again here telling of improvement soon! Go Well X

Birthdaygirl profile image
Birthdaygirl in reply to Blodynhaul

HiHope you are ok. Just to follow up on our previous chat on the forum. My bloods showed positive antibodies and am off Imraldi and now waiting for Rituximab infusion with hope that it will get RD and pain back under control. BG

Like most of the meds, adalimumab is great for some and not for others. I’m in the not camp: went on it last September as my first biologic. After almost three months I was as bad as ever, so they added in a small dose of leflunomide to see if antibody formation was preventing it from working, but that made no difference at all. When I went for urgent review at clinic in February, I had visible/palpable swelling in 4 joints, tenderness in 14, and showed them photos of several other joints that were periodically swelling up at the time, including a knee. As a result of that, I finally got switched to etanercept a fortnight ago, after a 6 week course of pred to help tide me over whilst they organised the switch, and whilst it might be coincidence or wishful thinking on my part, I have to say most of my effected joints have felt a bit better the last couple of days. Better than they have done in a very long time, to be honest, although the etanercept is causing some properly pain in the bum side effects. My hope is therefore two-fold: firstly that it’s not a coincidence and it is already helping me, and secondly, that the side-effects will settle if given enough time.

My own experience and understanding is that they will likely want you to give it at least the full 12 weeks, as that is the timescale for effect, and potentially may also suggest adding in a DMARD like mtx to see if that gets it going. Depending on your team, they could be reluctant to agree steroids, though: one of the arguments rheum around here make is that it’s difficult to judge if meds are starting to work with steroid cover. That’s not to say they won’t give them or you shouldn’t ask, just that it is a small factor to be considered. I hope you start to see some improvement soon, and if not, that your team are quicker than mine to try you on something else.

vonniesims profile image
vonniesims

I have had 7 doses now, Feel lucky as I think its working. Less discomfort in my back and I feel much better, no fatigue which is great and suggests there is less inflamation .

Lizzyear profile image
Lizzyear

Thank you for all your comments. It has reassured me, as I felt they thought I was exaggerating. I’m really not, I would love to be out of pain in my hands and feet. It stops or seriously limits what you can do. I’m takin so much pain medication, it’s so disappointing. They also say give it more time. Unfortunately, when I’ve been on it 12 weeks will be just after my daughter gets married, and I so wanted to feel well to enjoy it. Once again thank you for all your replies and so pleased it is working for you vonniesims. HopeCharlie_G, Birthdaygirl and lolabridge all find some med concoction that brings you relief from pain.

in reply to Lizzyear

A lot can happen in a few weeks; got everything crossed here that by the wedding it might be giving you some benefit.

patrickd profile image
patrickd

I've taken it in the past and had no success after 3 months so we stopped. Maybe it's too soon, I'm not sure? Sometimes these meds. have this way of things getting worse and than boom...better!

Potatos profile image
Potatos

I've been on it since 2006. Initially Humira and now Amgevita. It worked quite quickly, I had some relief within a few weeks and continued to improve over about a three month period until I was back to doing all my usual activities. If you feel it isn't improving things make sure you let rheumatology know.

Tired-fed-up profile image
Tired-fed-up

I’ve been taking it for 6 months and am *just* seeing an improvement 🤞🤞

helenlw7 profile image
helenlw7

I was on it for 12 weeks with absolutely no change in my pain level. My first biologic worked for over 10 years so this was very disappointing. I’m now on a JAK inhibitor, Baricitinib, and it’s like a miracle! We’re all different and just because it didn’t work for me, it doesn’t mean it won’t work for you. Good luck.

Katie-Mag profile image
Katie-Mag

Hello Lizzy, sorry Amgevita doesn’t seem to be working for you. It has been really effective for me pretty much from the start. Hope you find the best medication for you very soon!

oldtimer2 profile image
oldtimer2

I've been on Imraldi (adalumimab) since Novemeber 2021. I had almost given up on expecting to have a biological treatment as I (only!) have moderate Rheumatoid Arthritis and my blood tests are never spectacular, so was never quite eligible. Now the criteria have been changed (and the cost lowered) and those of us with moderate disease can have it.

For me it has been like a miracle. I can see my knuckles again and even open jars, make an omlette and write by hand! My feet are much smaller and I've been able to wear shoes that had been hiding in the cupboard for, well, years.

My remaining problems have nothing to do with inflammatory arthritis and everything to do with the results of having long standing osteoarthritis in my spine... which could, of course, be related to my long history of Rheumatoid Disease!

Blodynhaul profile image
Blodynhaul

Hi Lizzy, all last year I was in an awful state of agony and debilitation due to the Leflunamide I'd been on for about 7 years stopping working for some reason and the RA came back in full force! In July I was put on Adalimumab with very high hopes, but after 3 months on it, I was still in a terrible state and it had made no difference at all. The Rheumatologist then ordered a blood test to check if I was producing antibodies against the Adalimumab - and I was! So, it was stopped and in December I started on a new Jak-inhibitor - Filgotinib and gradually over 4 months I have had a lot of improvement in the RA inflammation (though still not well with Fibromyalgia & ostearthritis , but so grateful for improvement).

If I was you I'd ask your Rheumy for an antibody test for it, though they may want you to stay on it for 3 months in case it starts to work. It seems quite a lot of people do well on it, but, like all these drugs, it's an individual thing & some things don't work for everyone. Good Luck!

Birthdaygirl profile image
Birthdaygirl

Hi Lizzyear Thank you for sharing your story. It’s been a real help.

Wish you well

BG

BJC1980 profile image
BJC1980

Was prescribed Imraldi almost one year ago to the day for the severe RA I had developed and have to say it changed my life. I remember thinking 3 months in that the drug was useless and not working, my mindset on this was already bad because I had tried so many DMARDs that had failed. It took maybe 16 weeks for it to really have a noticeable effect and one year on I find I rarely get the bad flares that left me bedridden. There are downsides, I have had a couple of bad infections which are likely linked to the biologic and my liver enzyme levels seem a bit messed up.

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