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Remicade / Infliximab

(17 Posts)
Mumsfret Fri 28-Feb-14 11:37:45

Just had my first infusion the other day (I suffer from Crohn's colitis). Anyone have experience of this treatment? I'm in so much pain that it'd be good to know how quickly it's worked for others! confused

DrewsWife Fri 28-Feb-14 11:40:15

My daughter was recently on it for arthritis. She's moved to something else now but I keeps her under control. Can take a few to get it to correct dose levels x

Mumsfret Sat 01-Mar-14 12:53:29

Thanks drewswife. Do you mind my asking what she's moved onto? Did the Remicade stop working by any chance?

DrewsWife Sat 01-Mar-14 13:10:23

She is a teenage arse. Failed to show up for a few sessions. And the risk of allergic reaction increased thanks to stopping and starting. She also kept refusing to take her methotrexate which they said could also increase her risk. blush. She didn't care.

She is now on Toccaluzimab Which as it's not made the way of the infliximab means she won't need the methotrexate.

Docs want an easy life lol. She is a total nightmare.

The infliximab works great for her. Before that she was on entanercept which was brilliant but as she required two injections a week which bein an arsey kid wasn't an option... She was moved to infliximab.

Infliximab wasn't the best for her type of arthritis but the results were brilliant for her. She was hobble into to clinic for her drip and bounce out. It did take a while to build up in her system initially though.

Mumsfret Sat 01-Mar-14 16:07:17

Gosh, arthritis though; it's an awful affliction for anyone, not least a teenager. Must be very hard for her. I

I wasn't diagnosed with Crohn's until I was 30 and I've spent a good many years in denial/not taking meds properly, etc. And I'm supposed to be mature & sensible hmm confused

Having to face up to the realities of the illness now though as have had an awful time since delivery of my third child. I'm not noticing any great difference since my first infusion but then it was only three days ago!

DrewsWife Sat 01-Mar-14 18:09:46

You won't notice anything until possibly the third. I don't want to make you feel sad but at the moment the meds are building up in your system. The first wave has gone in.

DD was diagnosed aged 7. Took me two years of fighting to get them to believe me. But we got there. She has two types of arthritis and really has had a rough ride. But I teach her I find other ways to do things.

Being a teen she ignores all that and plays on it lol.

With your condition you must take better care of yourself. Like my DD, you can try to be like everyone else all you like but it won't help in the long term. Try to be the best you that you can be.

Be very kind to yourself as well. It's a big thing to be diagnosed with a long term condition. I seriously understand the need to rebel against having a crappy illness.

My DD is nearly 18. She is loved and has learned most of her limits. But we have had years to get used to them. X. I'm here if you ever need a chat. Pm me smile.

gobbin Sun 02-Mar-14 00:16:09

I had my 4th infusion last week. The first started working within 5 days. I've gone from liar slop 4 or 5 times a day to once a day or every other day (how I used to be pre-Crohbs). It's also healed my perianal fistula.

For me it has genuinely been a wonder drug. I just hope it keeps working. Good luck!

gobbin Sun 02-Mar-14 00:17:42

> liar slop < lol I mean loose slop (nice!)

Mumsfret Sun 02-Mar-14 13:08:05

Thanks drewswife smile I really appreciate that. Can't have been easy for you to watch your DD go through this nightmare either. In some ways I think it's harder for my DH to watch me go through the pain than it is for me to actually live it. Sounds like you've been an unstinting support to her; she's lucky to have had that. Perhaps some day she'll face up to the reality of her condition & appreciate what you've been trying to teach her!

Gobbin, I'm heartened! So pleased to hear that this has been a miracle drug for you grin grin grin

I'm still in a good deal of pain 4 days post Remicade. Most of my other, usual symptoms (urgency/frequency, diarrhoea, bleeding) had improved/resolved on a recent course of Prednisolone, but have been replaced by this almost constant pain & tenderness which feels to be in the transverse colon area (pain is just above belly button & upper left quadrant - symptoms used to be confined to the descending colon and below). It's almost like my bowel's gone the opposite way, like it's slowed down/sluggish, constipated, etc. I can almost feel the material passing through confused (sorry TMI). I know from recent CT scan that there's been some thickening/narrowing in the transverse colon. I worry about strictures. And I worry that Remicade won't resolve this remaining issue, which is pretty all-consuming pain-wise, especially when I'm constantly carrying/nursing a newborn sad

Trying to remain positive/upbeat, & seeing GI consultant this week.

gobbin Sun 02-Mar-14 13:35:07

Mumsfret make sure you drink plenty of water. I drink lots of tea but have needed to up my water intake (about 750mls extra a day) in order to keep things moving. The infliximab has slowed my bowels down considerably, so you may find that you're 'backing up' a bit and this may be hurting your strictures. Keep it all flowing.

Mumsfret Sun 02-Mar-14 14:27:48

I'm sure I don't drink nearly enough water. Good advice, Gobbin. I'll definitely try that. Thank you.

<glugs pint as types>

I should probably cut down on caffeine too, but find it soooooo hard to deny myself that little pleasure/boost ☕️, especially after a difficult night.

Mumsfret Sun 02-Mar-14 19:03:12

Shameless bump.

Been reading the MN thread on favourite family Indian takeaway orders & feeling sorry for myself now. Indian takeaways are out of the question with the pain as it currently is sad

MrsPinotGrigio Sun 02-Mar-14 22:12:52

I know how you feel, I also have Crohns but am stable on Mercaptopurine at the moment - I really miss Indian food but it's a definite no go! Hope you feel better soon. Also like you I wasn't diagnosed until late - I was 44 but Dr reckons I've had it since my early 20's.

triplets Sun 02-Mar-14 22:21:36

My brother is a Crohns sufferer and has been on infliximab for three years now, its completely given him a new life. His only worry is they may stop it because of the cost. Good luck to you all. x

MrsPinotGrigio Sun 02-Mar-14 22:33:29

I also feel my bowel move (sorry). I get a tightening feeling then that goes & I get a gurgling noise - like a blocked sink!!! I've got a stricture though but I think the feeling your bowel move is common in IBD.

Mumsfret Mon 03-Mar-14 21:33:45

Hello MrsP, nice to meet a fellow sufferer. I'm sure it's a stricture in my case. What matters, I guess, is whether it's caused by inflammation, or scar tissue. If the former, i gather Infliximab should help; if the latter, it won't, really, I'm told. I wait in hope...

triplets, that's reassuring re your brother. I am so ready to find my miracle "remedy". An eventual cure for this nasty affliction would be even better!

MrsPinotGrigio Tue 04-Mar-14 16:06:43

My stricture has been caused by scar tissue so I will need surgery eventually. I'm hoping the Mercaptopurine is my miracle cure - I've been on it nearly 2 years & so far haven't had a flare up. I've also got a bowel to bowel fistula on the other side mainly caused by the fact my Crohns went undiagnosed for so long & I had quite bad inflammation over the years. Hope the Infliximab starts to work soon.

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