Infliximab stopped due to infection
Posted , 4 users are following.
Back in January went for infliximab treatment for crohn's and was sent home without treatment due to having chest infection, gp gave me a course of antibiotics. Since then have had multiple infections all treated with antibiotics so have not received any crohn's treatment since then. The hospital has not kept in touch to let me know what to do. Due to covid19 doctor will only give telephone consultations. Has anybody else experienced multiple infections, had the treatment stopped for a long period? If you have what alternative treatment was offered? My specialist has forgotten about me
0 likes, 6 replies
sara11783 sandy88538
Posted
Have you spoken to your IBD nurses? i have had a similar thing happen in the past with infections getting in the way but not for the period of time your experiencing. I did try to come off my infliximab but my symptoms flared so had to restart. I had a 17 week break. If you are off your infusions for longer than a set amount of weeks you have to have the infusions given over a longer time period with anti histamines and steroids before each infusion as your risk of a reaction increases. I think it's 16 weeks. I would contact your nurses. Take care.
sandy88538 sara11783
Posted
Thanks for your reply, did you take antibiotics when you got the infection? I did and had an allergic reaction my legs swelled and I was unable to walk did you have anything similar? The specialist blames the crohn's but it happens every time I take certain antibiotics
sara11783 sandy88538
Posted
I was given some antiviral medication but not antibiotics at the time. I've never had anti virals before and i was fine on them. My body hates antibiotics though, the last lot made me sick. The infliximab runs me down so much. I'm desperate to get off it but my consultant doesnt agree. Have you tried any other kind of medication for Crohns?
sandy88538 sara11783
Posted
No nothing else has ever been offered. My specialist is very adamant that infliximab is the best treatment however have read that some hospitals use a combination of fecal transplant and antibiotics which seems to work. Doctors have never offered antiviral despite saying that some of the infections were viral all I have had is antibiotics and some of these I've reacted to causing my joints to become inflamed so severely that I could not walk. I have found that often the specialist blames the crohn's despite the condition improving when I stop the drugs. I just wonder if anyone else has had similar experiences
stephaney28634 sandy88538
Posted
Hi Sandy, yes i have had skin infections since March this year due to my infusions treatment for crohn's flare up. I received a letter 2 weeks ago saying my infusion was cancelled Ninewells Hosp Dundee Scotland due covid-19. My infusion was going to be 11 May 2020 too Perth Royal Hosp Scotland. I'm not a good traveller and have ilestomy bag and my dad hasn't travelled to Perth 25 years won't know it now. So, he phoned Perth Hosp and exlained to the nurse and she said would speak to my consultant at Ninewells. She phoned back next day said had been cancelled. So, it's up in the air!
sandy88538 stephaney28634
Posted
Hi stephaney the skin problems seem to be related to the treatment my skin dried up and is in very poor condition, never had any skin problems until starting the treatment now its very wrinkly and scaly. Anybody else have any ideas