failed on all medication so far.

[Lornap1]

Hi to everyone.

I’ve had rheumatoid arthritis for 18 years now and no matter what I’ve tried, nothing seems to work. I’ve recently had baracitinib and filgotinib and they didn’t work either. they want me to try tocilizimab, I’ve told hospital so many times I don’t want to inject myself and they never listen as I take severe panic attacks, this happened when I first started with adulimimab so it’s not like I haven’t tried as I also tried entanacept after adulimimab. My questions are, has anybody had this issue with failing on medication, if so is there anything that has helped you at all because I know they’re isn’t much left to try, the doctors have said that already. Also since pre Covid my rheumy team are non existent, I have to phone every other week to get anywhere with them and they talk to me, promise to get back to me and they don’t. I’ve not seen a consultant in years. I have asked to change hospitals but they said I’m not allowed. At the moment, I took my last filgotinib 2 days ago and been left with nothing as the meds aren’t working so the hospital has stopped it. 4 times within 10 days I spoke to them about this and got no response. So sorry for the long post, any advice would be appreciated 😃

[medway-lady]

As you say failing do you mean after you’ve given them time to work as nearly all take 12/14 weeks. It’s a hard one as depending on age you may not be able to get JAKs so it’s injectable or infusion for the biologics. I don’t know how many there are and suggest you look up NRAS website to check. But here they’ve said people are going to be limited in number of choices so I’d suggest that you need to really discuss your options with the clinic. It’s hard with a needle phobia but perhaps they could or your GP could do get some CBT training for you. I assume that you’ve tried MTX , LEF and AZA before the biologics were introduced and that you’ve not got another condition or disease that might be the issue. I wish you well and hopefully you can discuss this with your GP to try to get more help.

[Lornap1 in reply to medway-lady]

I tried everything before the biologics, sulpazaline, Arava, leflouminide etc, entanacept and Adalumimab both injections, ruituximab was an infusion in the hospital. All drugs I have tried, I’ve gave them over 1 year to work but nothing. I have no other disease that may contribute to this but I was doing a bit of research and I was diagnosed with H pylori in my early 20’s. I had therapy for that, didn’t work so I had triple therapy, didn’t work so I was given emoprazole and have been taken them ever since. I was diagnosed about 7 years later with RA so I’m wondering if they’re is a link between these 2.

[medway-lady in reply to Lornap1]

My husbands had H pylori it was treated as you say with two different antibiotics. I don’t know if there is a link but seven years is a long time to get a connection. Are you sero negative or positive ? It’s hard to understand how nothing works as antibiotics are completely different medications to RA and so I really think you need to get professional advice. Perhaps ring the NRAs helpline ?

[Lornap1 in reply to medway-lady]

Thank you for your advice, I think I’ll give them a call. I’m sero positive and my RA is severe and very aggressive. I only thought about the 2 conditions together due to reading a post that was on here, I’m not reading too much into it but I’m finding it interesting. I now know there’s new treatment out for the H pylori so I’m going to ask for that. I’ve not much luck when it comes to treatment 😂.

[Madmusiclover]

You can change hospital. I’ve just done it. Speak to your GP.