Adalimumab (Idacio)

[barbieg]

I’ve been injecting this since last November. I noticed most people are using this alongside another medication. I’m not and I really don’t think it’s working well. I have had to give up on Sulfasalazine and Methotrexate so wondering what else could be offered. I have high blood pressure so not sure what I could take. I’m seeing my RA Consultant tomorrow, I’ve actually got a F2F appointment. How lucky am I?

[Oshgosh]

you’re lucky.

Have you made a list of questions.?

[barbieg in reply to Oshgosh]

yes, I’ve made a list. It’s a long one but needs must.

[Lolabridge]

Sorry to hear you don't think it's working for you - it didn't work for me either and, like you, didn't have methotrexate to fall back on. If you've been injecting it since November it really should be working by now.

I hope your consultant will suggest a different biologic when you have your appointment tomorrow and that you can get started on it quickly. Unfortunately, it may take several weeks and I find I usually need some prednisolone in the interim period so I can continue to function independently.

Good luck with your appointment tomorrow.

[barbieg]

Thank you , I’ve got a long list of questions and a photo of my permanently swollen foot. I don’t understand why Rheumatologists never look at our feet and not interested in them. I’ve had this swollen painful foot and Achilles Tendinitis for months and my consultant still says it’s nothing to do with RA.

[Wafflefan in reply to barbieg]

Same here! I don't understand why they don't look at feet either. I ended up going to a private foot clinic to sort out my feet and orthotics. I had NHS orthotics for years but then started having real pain in feet, knees and hips last year so decided to go for it. Made such a difference for the better.

[nanny_bee71]

I've been on adalimumab (imraldi) since end October alongside sulfasalazine and methotrexate. No obvious improvements from injection. Still struggling with getting a f2f with rheumatoid but after telephone consultation agreed to rest imraldi for 3 months.

[barbieg in reply to nanny_bee71]

It’s so disappointing isn’t it when it doesn’t work. It was the first Bio Similar for me so it was a big deal injecting myself. I hope the next 3 months aren’t too painful for you.

[Cazza67]

I was on Adaluminab for about 6 months as a solo drug, it didn’t help me at all I just ended up with two colds, one chest infection and two lots of conjunctivitis in three months!. Decided it wasn’t worth carrying on. I am now on Cosentyx which works ina different way, I have only been on it a couple of months but am feeling much worse, more pain in every joint, even the ones they tell me are osteoarthritis! Hoping it’s a case of gets worse before it gets better 🤞. Hope your next biologic works well for you.

[Wafflefan]

I've been on adalimumab (Amjevita) & sulfasalazine since last November and was also my first biological. I felt like it worked for a bit but not enough, had fat/swollen knees, sorted that with steroids, got a bug and haven't been right since. Good that you've got a list of questions, I also emphasised how I'd been feeling on my worst days and writing a log (otherwise I forget), especially if you're not as flared up when you have the F2F.

My experience was they were quite dismissive at first, telling me to give it time, but I just kept track of how I felt and calling whenever I had bad flare ups etc. They eventually listened, and fortunately my bloods told them the same story I was telling them and I'm now going to hopefully start on the next one soon, for me it will be rituximab.

Keep going and be persistent, be confident, you know your own body better than anyone and you know when something's not working, hopefully the next thing will work better for you and me both. Best of luck barbieg.

[barbieg in reply to Wafflefan]

Thank you. Just off to my appointment. Will let you know how I got on later.

[barbieg in reply to Wafflefan]

I had a wonderful appointment. I changed consultant last year and so pleased I did. She gave me a thorough examination and said my RA was still active and agreed the Idacio wasn’t working. She examined my foot too and said it had collapsed and I desperately needed orthotics which I’ve been waiting for since November and there are still 100 people in front of me. I’ve had a depo steroid shot to tide me over while I wait for my next Biologic (Tocilizumab) I really hope this one works.

[Lolabridge in reply to barbieg]

So pleased you've got a Rheumatologist who listened to you and that you managed to get your feet looked at. I've had the same problem in the past and resorted to going to an appointment in flip flops so feet could not be ignored!!

I have custom-made orthotics and could not manage without them. But now my right ankle is so bad I think I need surgery which I had been putting off - either an ankle fusion or an ankle replacement. I've written to my orthopaedic consultant (who sorted a bunion for me in 2018 before I got RA) and subsequently arranged for me to have ultrasound guided injections into the ankle joint and arranged for the orthotics too.

I'm now on RoActemra (Tocilizumab), which is working well for me, and it started to work after only a few weeks. I inject weekly (some have it every two weeks). I'm still on prednisolone too at the moment but hope to get off that too.

Really hope you can get started on the Tocilizumab very soon and that it will work well for you too.

[barbieg in reply to Lolabridge]

I had to laugh about your flip flops although I’m sure that wouldn’t have worked with my old consultant. I had complained about my feet for years and always ignored. She wasn’t interested. So annoying as this consultant hinted that if my foot had been looked at earlier things might not have got to the point where it’s collapsed. I’m told I will have to inject weekly too. I had my bunion operated on years ago, one worked well, the other didn’t and it’s that foot that is causing me all the problems. I’m thinking about going private for the insoles but don’t know where to start.

[Lolabridge in reply to barbieg]

Try looking on the internet for a private podiatrist that specialises in biomechanics. Or put up a post on your local Facebook or Nextdoor site asking if anyone can recommend where you can get orthotics made locally.

[Wafflefan in reply to barbieg]

Oh excellent! I don't know about you but I always feel more at ease when I know things are moving along. As Lolabridge said so pleased that you've got a good'un. Hope tocilizumab works, keeping my fingers crossed for you.

[barbieg in reply to Wafflefan]

Thank you. As above I had a very productive appointment and came home so pleased I had fought to change consultants last year. This one is the total opposite of my last one. She listens, exams you and has a great sense of humour too.

[Wafflefan]

Just saw your bit about potentially going private re: feet. In case, you're based Leeds way, I'd recommend Jonathan Stanley at the Foot Pain Centre of Leeds.

[barbieg]

Sadly I’m near Colchester Essex. I was born near Leeds, in Pontefract and still love Pontefract cakes 🤪🤪

[Doryza]

Hi! I had adalimumab for 6 months, I didn't see any effect, I also had leflunomide at the same time, to no avail. 😒 Cortisone (Medrol or drips) and sulfasalazine worked for me, but it lowered my white blood cells and then I had to quit her(sulfasalazine) .I am currently on targeted synthesis (baricitinib) and Medrol, I am much better than I was... Wish you no pains!

[barbieg in reply to Doryza]

thank you. Glad to read your new med is working. Fingers crossed mine does.

[BonesY2K]

Good I luck with the new biologic- Have been through many some of which worked for a few months, others that did not but am now on Tocilizumab. Have been able to reduce methotrexate and other anti inflammatories. Not a “cure but am much more comfortable and functional. Wishing you well xx

[barbieg in reply to BonesY2K]

Thank you. Glad to read it’s working for you.