Not posted for a long time

[28maggie11]

Hi it has been a while. I wrote before about toccicilizumab which was causing extreme pain in my right shoulder. I wasn't listened to and told to continue. I tried it for 17 weeks pain excruciating stopped for 7 and then started and lasted 13 weeks before pain started again.

I complained but to cut a long story short I wasn't listened to and have not been on a biologic for over a year. My GP has been very understanding and and has given me a couple of steroid jags as I await an appointment at another hospital. Told 34 weeks but suffering badly and then received an appointment from...wait for it with the same consultant. Mind you she was as surprised as me. I had to go but took a friend because of the lies. Now down as urgent and she is sending me a list of biologics so I can go to new consultant and present him or her with the one I think would be best. Really!! Anyway I would like to ask you lovely people to advice me about choosing a biologic. I have tried benepaly (never worked), humira (one injection caused a rash), ritximab infusions ( stopped working after 30 months).

Any help greatly appreciated

[Amnesiac3637]

Hi. Sounds like you’ve been through the wringer. It’s difficult to recommend a drug as everyone reacts differently. I might mention here that I’ve been on pretty much everyone of them - some worked and then didn’t and some poisoned me and I had to come off them and I’ve lately been on Baricitinib for three years. Unfortunately in November I started flaring, February I got Covid and started flaring even more so the team thinks it’s stopped being effective and I’m switching to Tocilizumab which is the one I haven’t yet tried! I really liked Baricitinib best as it’s taken in tablet form and has a very short half life so leaves the system very fast if there’s any problem and I had no side effects at all. Infliximab infusion was the first biologic I had, made me a new woman and then gave me drug-induced lupus so you can never tell what’ll suit you. I think you’ll have to be guided by your team but ultimately how you feel when you’re on whichever drug you have next as it’s your body - the rheumatologists don’t live with our ailing bodies! Good luck and hope you find the right combination very soon as it make such a difference to life.

[28maggie11 in reply to Amnesiac3637]

Thank you for prompt reply

[Mmrr]

I do hope you have a better appointment this time round.

Biologics didn't help me much...JAK inhibitors have been much more successful and they come in tablet form so no injecting.

Baricitinib was good for me, but I kept getting minor viral infections. I changed to Toficinitib which gave me good relief without the viral infection issue.

They might he worth asking about.

[28maggie11 in reply to Mmrr]

Ty wary of tablets as a doctor put me on naproxen without a prazole but when I get an appointment I shall ask about inhibitors

[Biofreak]

Hi Maggie. You have struggled long enough. Biologic treatments and their effectiveness vary so widely for patients. What works for one person may not work for another person. Unfortunately there's no test to determine which biologic will work so it's all trial and error. I think the important thing is that Tocilizumab doesn't work for you (as it didn't for me) and that's the fact you must stress to your rheumatologist. I think you've tried it for long enough and no amount of perseverance on your part is going to make any difference. My rheumatologist accepted this and prescribed Abatacept based on the fact that I had already been on Etanercept, Humira and Tocilizumab. Etanercept and Humira both worked for a good while but Tocilizumab caused muscle aches in the extreme. I can't see how you can choose because you're not medically trained in rheumatology so your rheumatologist will have to use her understanding of how they work to decide which may work for you. The rheumatologist already knows the ones that don't work for you. Good luck at your appointment. Hopefully after a good discussion (hope she listens this time) with your rheumatologist about your struggles you will get something that does work.

[28maggie11 in reply to Biofreak]

Ty being referred to another rheumatologist so hopefully one with ears

[Biofreak in reply to 28maggie11]

Hope so too xx

[Chrissycl]

I used Entercept to start with and it worked great then swapped to Benipali like you it didn't work for me neither did humria swapped back to Entercept but now on Baricitinb which is working just fine, plus no more selfinjecting either. Hope you can get sorted soon

[IslandLife53]

Hi Maggie! Big decisions! I did one year of Humira for RA and PsA …no relief. Six months each of Cimzia and six months of Remicade; no relief. I’m on DRMDs now, no flare ups. 200 mg of Plaquenil/day plus MTX 10 mg/week. It takes time to get it “ right” for every individual. I wish you the best!

[28maggie11 in reply to IslandLife53]

Ty sadly can't take dmards thanks to a doctor not given me a prazole with naproxen