Worries over new drug treatment : Infliximab

[K9910]

Experience requests please. Due to continuing inflammation, my RA has suggested that I stay on low dose Prednisolone (5mg) and MTX injections (15mg) but also start receiving infusions every 8weeks of Infliximab. The side effects I read on this drug seem worse than my regular aches and pains and I’m wondering if I should request another treatment schedule. I get bloods taken and chest X-ray tomorrow and I’m really nervous. Has anyone taken this drug with (or without!) positive results?

[Lolabridge]

Hello. Many of us are on biologic drugs like that because the usually prescribed (cheap) DMARDS weren't controlling our inflammation. When we read the drug information and see the possible side effects listed it could make us worry. But if we need these drugs we are prepared to try them and often we don't experience any of the side effects listed in the patient information leaflets. The manufacturers have to cover themselves by listing every possibility and if you look at the possible side effects of taking Paracetamol you would probably never have taken it!

I'm on Rituximab infusions and that biologic has worked really well for me and got my inflammation under control. I haven't had any side effects whatsoever, apart from having lowered immunity to infections and I can live with that.

I'm sure your Rheumy would not have prescribed Infliximab if you didn't need it and will have selected the drug most suitable for you and your condition. Try not to worry and hope that it will work well for you to stop the inflammation causing permanent damage to your joints.

Good luck!

🤞

[K9910 in reply to Lolabridge]

Thank you so much for your reply. My inflammation of joints is completely under control but my left optic nerve is the problem, which affects my vision. I appreciate your advice; helps me feel a little less anxious.

[sule]

I've been on Infliximab for the last 10 years. I've had no side effects and brilliant results. For me, it's been a Lazarus drug as it literally enabled me to walk. All drugs list side effects including Methotrexate and steroids. It is, of course, your decision to make.

[K9910 in reply to sule]

Thank you for your reply. I was just scared of having to try yet another drug. Glad you’ve had positive results!

[Grounsel]

I have been on methotrexate and infliximab for about 20 years and it is still working for me . No bad side effects so hopefully you will have good results .👍

[K9910 in reply to Grounsel]

I’m relieved that both work so well for you together. Hopefully I can finally get off the steroids.

[Grounsel in reply to K9910]

When I started the infliximab I was on steroids but it was hard to get off them , especially the last few I used to cut them in half to reduce the dose . I have been off them now about 17 years . Hopefully you will be the same .

[cathie]

Please dont worry. I'm sure you'll be well cared for. I took Infliximab for nearly ten years and it really kept me on my feet and relieved symptoms. I had to come off it because of adverse reactions to methotrexate which I took with it. But Infliximab really helped, the main problem being having to go for an infusion regularly. However they have speeded up the infusions now so that aspect isn't so demanding. Good luck!

[K9910]

Thank you! MTX 20mg affected my liver enzymes so they lowered the dose to 15mg. Crossing my fingers for the drugs to work well together so that I can finally be weaned off Prednisolone!