First Infliximab infusion next week - anyone's experiences appreciated

I'm having my first Infliximab infusion on Tuesday and just wondered how anyone else found the experience and whether the drug worked for them? The main thing I wondered is how effective is it? If it works, how soon does it? I'd be grateful to hear of other's experiences, thank you.

[Bob56]

Hi My son would normally have replied to this as he had infliximab for a couple of years. As he's not around at the moment, I can tell you that it worked very well for him and was a great relief after years of less effective medications. He was also able to come off steroids for the first time in years so he had no regrets about taking the drug. The infusions which took a few hours didn't seem to cause him any discomfort, and he felt the benefits almost immediately, certainly within a couple of days. In my son's case it did become less effective as time wore on and some of his symptoms reappeared. Eventually he moved onto Humira, and has been on this for the last 7 years with great results. I am sure he would be happy to answer any other questions if you had any.

[Valbaty54]

Hi, I have had 5 Infliximab infusions, which are quite straightforward and a good excuse to relax/ read/ watch tv for a few hours! I did not have any bad reaction to them, nor good ones, I'm afraid. Apart from one good week after the second one, my symptoms have remained much the same. I doubt I will have any more - seeing the consultant next week. Hope it works for you!

[Hidden]

Thank you for your comments, my IBD Nurse rang to say we're good to go for Tuesday to start (the go ahead was based on my blood results because my liver's been so high due to Mercaptopurine which I was taken off 2 weeks ago) so I'm keen to get started as my symptoms are worsening. I'm really hopeful it'll work and I'll see results quickly. I've read that if it doesn't work within a few sessions they don't carry on with it, were either of you told this? My Nurse wouldn't commit to telling me much detail on my enquiries!! I've also read that it can help initially but then wear off/have a lesser affect later down the line so I also wonder if there's any truth in that and based on your response there may be?

[Valbaty54]

I was told that if it was going to work, it usually kicks in between the 2nd and 3rd infusion. This really didn't happen for me, apart from the brief improvement, and I suspect it will be stopped. This may have happened earlier if I hadn't had to cancel a clinic visit before Christmas because of snow. This has delayed our plans for what to do next! One drug option left.....

[Hobbits in reply to Valbaty54]

Can I ask what your next Drug option is, Entyvio?

[Valbaty54 in reply to Hobbits]

The next drug is vedolizumab. Not sure of the brand name. It's expensive and can take around 14 weeks to work.

[Hobbits in reply to Valbaty54]

Entyvio is brand name of vedolizmab.

[Hidden in reply to Valbaty54]

Hi Valbaty, do you mind letting me know what happened - did your Infliximab get stopped? Did it not work?

I've had my second one a week ago but no improvement yet, I remain positive it will kick in soon xx

[Valbaty54 in reply to Hidden]

Hi, I'm afraid it still hasn't worked for me, but I am having one more infusion in two weeks. We have decided to go for surgery, rather than wait for approval for the final drug option (vedolizumab) and then possibly another 12 - 14 weeks for something to happen....or not! After nearly three years of non-stop flare, I've had enough, and parts of my colon are in a severe state. I'm just waiting for a full scope to assess its current condition. However, do not despair! We are all different and you may find it works for you - do hope so. xx

[Hidden in reply to Valbaty54]

Thank you for your reply - how many infusions have you had in total? I'm surprised you're getting another, my IBD Nurse told me after my third my consultant will assess any symptoms I may have to assess whether to carry on or not (it seems quite strict, which is why I'm really hoping it works soon!). I suppose different Hospital Trust may have different policies on the amount you get?

[Valbaty54 in reply to Hidden]

The next (and probably final) infusion will be no.6. Because I was already booked in by the Infusion team, the consultant said to go ahead and have it as planned. I am actually having Remsima, which is a biosimilar. Remicade, the original drug, is now out of patent so new cheaper versions have appeared. Do you know what you are having? I think Trusts will have different policies according to their financial state!

[Hidden in reply to Valbaty54]

It says Infliximab and Remicade on the infusion bag when I have it, so if it's the more expensive one that may be why they assess after the third. I'm only 8 days after my second infusion but I'm starting to get nervous as it gets nearer to my third one that it may not be working - it is so difficult to keep calm and not get too obsessed with watching every symptom.

[Hobbits]

I was told something quite different, I was told that the infusion treatments can take months to start working. If after six months it’s not working then they move onto the next biologic , most likely Entyvio for me.

I loose a day of work on my infusion day. I’m so tired from it I usually just sleep all day. Then the next day I am fine. Saturday appointments are extremely hard to get, so I loose a work day, I will take a sick day or a vacation day so I do not loose any pay

I’m due for my third infusion in less than a week and I have had no major change in symptoms so far, and have been in a very brutal flare for four days now. Almost left work by ambulance two days ago, as my stricture pain was so intense.

I have faith that Remicade will kick in and treat my Crohn’s disease, I just have not been on it long enough to see any major positive results-my body is aching for the next treatment.

I also have Rheumatoid Arthritis which the Remicade will also treat, and my body is missing badly the Enbrel that I had to stop taking in order to start Remicade - my RA is now active agin after being in remission for almost two years...the length between infusions is too long it seems. I have to be patient and wait it out, see if the influximab starts working. I know it’s doing something because I have more energy the day after infusion, and chronic fatigue has been a plague for me, it is nice and hopeful this drug will work given time to build up in my system.

I think the time it takes to kick in is different for everyone and the level of relief is different for everyone, this is why there are so many biologics, different ones work for different people as we are all so individual in our common disease

Good luck with your treatment! ☺️

[Cherylvit]

Is this infliximab infusion for the treatment of fibromyalgia or something else? I don’t think 🤔 I’ve herd of this before? Does insurances cover the cost? Just curious about it. Not sure if this would benefit me or not. So just asking.

[Hidden in reply to Cherylvit]

Hi there, I'm not sure about Fibromyalgia - I've only ever heard of it being prescribed for IBD and some other autoimmune diseases and I thought Fibromyalgia was a functional disorder?

[Cherylvit in reply to Hidden]

@ClaireAlice2 what do you mean by “fibromyalgia was a functional disorder?” I was a RN and feel I should know but the fibro fog is clogging up my brain from functioning right. 🤷🏼‍♀️It is very frustrating for me. Dementia and Alzheimer’s does run in the family. Both my grandmothers had dementia and my mom had Alzheimer’s. SSDI doctor diagnosed me with dementia back in 96 all the way up until 2010 I had the diagnosis of dementia. 😒

[169bus]

Dear ClaireAlice. I found the drug very easy to take, after the first infusion you have to wait two hours to rest, makes lots of people tired that day and the next. But it works, all the best. bus169

[Hidden]

I really appreciate your responses, I had my infusion yesterday and it went well, I didn't know I'd be given IV steroid and piriton a half hour before infusion and that piriton made me sooo drowsy!! Today I feel tired but fine. I'm not sure if I'm getting ahead of myself with my optimism but I've had less bleeding/mucus today but I'm not sure if that's due to the IV steroid as it may be too early to think it's the Infliximab already? Any thoughts anyone?