Humira not working for PsA. What next?

[OchonAgusOchonOh]

I was diagnosed with fairly severe PsA in July (9 joints inflamed, axial involvement, 3 toes with dactylitis, plus various tendons/ligaments affected). Rheumotologist put me on humira, which I started in August. Some improvement (reduction in number of joints affected and only one toe with dactylitis) but definitely not remission. Went up to weekly doses in November. Only real improvement I noticed was a sudden increase in flexibility in my most affected finger.

Since then, I have a stiff and sore neck and constant pain in sacroiliac area of my back. The worst affected toe in terms of dactylitis has now developed a slight hammer toe so I assume there is joint as well as ligament damage there.

I'm back to the rheumotologist next month and am just wondering what she is likely to recommend. Has anyone had a similar experience of humira helping but not sorting PsA? If so, what worked for you?

I have other autoimmune conditions and it stopped working for me too.

They recommend taking injections of methotrexate alongside the tnf inhibitor as it usually works in tandem and reduces risk of the body producing antibodies to the Tnf inhibitor.

Have you found something that works for you now?

My understanding is that methotrexate doesn't work for axial involvement though? Or does it boost the humira in some way or something?

Doesn't methotrexate have nasty side effects too?

Put me on cosentyx. It's a lot more effective for me.

Glad to hear it's working for you.

I have Ank Spondylitis, Sjogrens and IBD. The methotrexate is supposed to boost efficacy of tnf inhibitor. Methotrexate for me is for Sjogrens. And it's supposed to prolong the effectiveness of tnf inhibitor by repressing production of antibodies to the tnf medication. ( The reason they stop working is often because your body starts making antibodies to the blinking medication.).

This is another risky med, you're right. I'd research it myself extensively then ask the consultant. I believe cost is going to be a factor in decision making so a little bit of background research before next appointment as you're doing is useful. Oh but do remember you're often dealing with egos so it's best to pretend you don't know too much and instead just ask their advice on meds such as X y z.

Your consultant will have experience of other patients and which meds tend to have good outcomes in PSA from their experience treating them- also whether methotrexate has a place. I usually say ' can you give me an idea of how effective this medication is in your own cohort '. A % or something.

I do alot of research on a website called Drugs.com.

I'm taking Simponi now and feel it's not helping me.

They have different meds called JAK inhibitors. I'd research them and their use and effectiveness in PsA before next appointment. They might not use them in PsA but have a look into it.

Thanks @Wishyouwerehere50 . I hope you find something that works for you soon. It's awful when it doesn't work and then the worry of start next.

I was thinking the JAK inhibitors or the IL-17 or IL 12/23 would be where I would be heading but am concerned she might suggest methotrexate so will definitely be querying that if she does. I'm not sure cost would be a huge factor as I'm in Ireland and attending a private rheumotologist although I do get the drugs through the state payment scheme (max €80/month for the whole family) so I don't know is there the same pressure on private rheumotologists in Ireland as there might be on those in the NHS.

I was reading about a medical implant that stimulates the vagus nerve and looks very promising for RA. It's still only test stage though. The other way to stimulate the vagus nerve is cold water swimming but that's not happening unless I'm truly desperate and even then it's debatable.

I've only been to her twice but she doesn't seem terribly ego driven. Hopefully she will be OK with me questioning things.

I'll check out that website you mentioned and investigate the various drugs.

I was on humira but for psoriasis without the joint issue. It worked for 3 years then stopped. They changed me onto another biologic, risankizumab, last January and so far so good. It has sorted it about 99%. Methotrexate on its own had no affect so no one ever mentioned using it again

Glad it's working for you @lazymum99 Presumably you started making antibodies against the humira for it stop working? Is your new biologic also a TNF inhibitor or is a different class? There doesn't seem to be agreement on whether you're betting switching within class or across classes.

It is an IL23 inhibitor. I don’t really understand the ins and outs and just trust the drs.it all seems highly specialised and complicated

Yes, it is all very complicated.

While my rheumotologist has a good reputation, I've heard too many stories of people being treated appropriately so I try and get myself as informed as possible. If I hadn't insisted on a rheumotology referral, my GP would not have sent me as she didn't think it was PsA. She wanted to refer me to orthopedics for a steroid injection for my foot inflammation.

But yeah, when it comes to drugs, I will go with the rheumotologist's recommendation but will want to discuss why she's going with whatever she recommends. At least she put me straight on a biologic so I didn't have to fight that one.