Infliximab

[Brian1977]

Hi guys just looking for advice I've been having a bad flare up of my ulcerative colitis since last June. I was diagnosed 2 years ago with peripheral and axial spondyloarthritis too. It's never been under control currently on 25mg methotrexate injections and now just started the infliximab after amgevita failed. Anyway I had my 2nd infusion yesterday and my walking has slowly getting worse the last few months with the pain in my spine. Today I can barely walk the pain is awful. Could it be the infliximab. It seems to have stopped the bleeding in my colon but my joints are worse. Any advice please would be great thankyou 🙏🙏🙏

[Wobbies]

I have infliximab infusions for RD. Works well on my joints but now have awful gastric problems and heart arrythmia so am having a break whilst I have gastroscopy and 24 hour ECG. So, I guess it has worked the opposite way for me. Sorry I cannot help but just shared my experience. You really must let your rheumy team know.

[Brian1977 in reply to Wobbies]

Thanks for the reply and sorry to read that you are having problems too it's bloody hard work eh. I'm away again to the hospital today too see physio so I'll say to her but I'm not sure I'll make it 😥 god of you didn't laugh you would cry eh

[Wobbies in reply to Brian1977]

So true, you begin to feel it is all hopeless but just have to keep going. At least the gastric issues mean I am losing weight rapidly which I needed to, so every cloud has a silver lining, I suppose. Good luck.

[Brian1977 in reply to Wobbies]

The physio wouldn't let me say no to going away today without a crutch 😥😥😥😥😥 46 and having to use a crutch I feel deflated and feel as of its finally beaten me 😥😥😥

[wilbertjellyfish in reply to Brian1977]

I'm 46 and have been using a stick for several years with my arthritis. I just got some really nice ones from neowalk, they do ones for blokes too. It allows me to keep walking although my issues are joints not back.Sorry can't help with your health issues I've not been on either of those meds, there aren't many I haven't tried.

Speak to your rheumatology team they usually have a helpline and good knowledge of all the biologic meds.

[Wobbies in reply to Brian1977]

I know exactly how you feel but consider it as a badge of honour that you are persevering no matter what. A brave warrior.

[Doodlereggie]

hi just a thought

I understand that the meds I am on now for ra are also the latest meds for ulcerative colitis so this could possibly deal with both your conditions.This is one of the new JAK meds.filgotinib,which I have been on for a year now,one tablet a day,and for me no side effects.As I am 79 it is still not sure if it is completely safe at my age as long term trials not yet available,but for younger people I understand it is a miracle.Google JAKs for ulcerative colitis and maybe ask your gp etc re possibility.Good luck Keep us posted.

P.s.it has worked for my ra and given me my life back!

[Brian1977 in reply to Doodlereggie]

I've got qn appointment with rheumatology in 2 weeks time so I will ask him then about it thanks so much for your advice 🙏🙏🙏👍👍👍👍