Infiximab/Humira - do i need more doses?

[Kerry]

Hi all

I got diagnosed with crohnes August 2011. I was put on prednisolone and came off it in Dec and the crohnes came straight back. Unfortunalty i thought it was withdrawl from the steroids so didnt seek help for a while and got myself in quite a state. My crohns has been twice as bad (inflamation marker count in blood test) since Jan 2012 than last year and i was very very anaemic. The consultant put me on pred again mid Jan but it hasnt worked at all. I also started Azathioprine mid Jan but because the pred wasnt working i felt so rough i stopped it asi thought the aza was causing me to feel so ill.

So 10 days ago i had an infliximab injection ( same thing as humira i think). It was an infusion done at the hospital and a bit scary as the nurse told me they had adrenalin ready incase i reacted! Well i feel good now. It took about 5 days but im at 10 days now and am feeling better every day and havent had any side effects. Im still on 20mg of pred a day and the consultant said i will have to go back on aza soon but she wanted me to have some time feeling better before i do as it gave me lots of side effects.

I have another infliximab injection next wednesday ( 2 weeks from first) then another 4 weeks after that. Im told thats the standard course.

Im feeling good - no diarea or stomach pain and im constantly hungry and can eat anything i want. Although i am told i look terrible - hmm frustrating when i feel well. My skin is like tissue paper. But i am putting on weight again. The steroids are kicking in now as im back to being fidgety and not able to sleep.

So if im feeling good and the CD symptoms have gone do i need the 2nd and 3rd infliximab? WIll they just do 3 anyway before maybe a colonoscopy to see if im in remission? Or could i be in remission after 1 infusion?

I should also say ive had an iron infusion aswell which has helped. i was so anaemic apparently it was no wander i was bed bound for January. Maybe the iron is why i feel so good aswell but it was the infliximab timing that made me feel better i think. Im a bit nervous about the infliximab next week and dont want to have it if i dont need it.

Also should i be coming off the pred now - desperatly want off it - am starving and belly and chin swollen and cant sleep. I guess if i come off it and im still well then we know the infliximab is working?

I was about to do IVF last year when crohns hit so im in a rush to get to remission so i can start IVF as im 38 next week so no time to spare.

I want off the pred, on the azathioprine and as few infliximabs as possible. I know that the end game is im in remission and just on Aza. Im very end goal orientated and im struggling to enjoy feeling good after months of feeling terrible. I just cant help race towards the end goal but am i jeopardising my recovery by trying to get off pred and have as few infliximabs as possible?
Shoudl i expect to be on pred and infliximab for a while? At least until i start aza and it kicks in?

 

[Jennifer]

Chances are they aren't going to stop 2 drugs at the same time. Not to mention feeling better doesn't mean you're fully better as you know so you may need those couple more infusions (I highly doubt one infusion will do it even if I've never had it, that sounds too magical). They may keep you on the pred a while longer after you stop getting the infusions or they may begin the taper sooner. Chances are the Pred didn't do much because 20mg is a pretty low dose (unless you were on a higher dose and this is your current taper dose). So you'll likely be on something before the Aza kicks in. The rule in medicine is to never stop taking them just because you start feeling better. Its the meds that make you feel better in the first place. My guess is that they'll do another scope after your 3rd infusion to see if you need anymore.

 

[rygon]

Im on infliximab and find it a great drug where I feel amazing virtually all the time. I dont bleed, bloat have pain or D anymore, but I notice these symptoms coming back approx a week before my next infusion (not to any great extent). Ive been told this is normal.

So for that reason yes you will need the next infusions, and also ones every 8weeks or so. They will normally keep you on aza to stop your body reacting to the infliximab as well.

 

[Kerry]

sorry all - i know i got the title mixed up a bit and infliximab and humira are different things - still learning.

i am celebrating the infliximab working. Im nervous about taking any drugs but i guess as a crohny ill just have to get used to it.

when i started on pred last august when first diagnosed i took 8 a day for a week then 7 for a week etc until i was down to 4 a day and i stayed on that for 2.5 months and was fine. Had the problems when i came off pred but i wasnt on anything else.

This time i started on 4 a day and have stayed there. I have all the negative effects of the pred now ive taken infliximab whereas before there was no effect good or bad.

Im taking the message that i could try to get off pred but would need to be on aza with the infliximab, although my consultant is aiming for me just to be on aza going forward but i have no idea how long that will take. Im always in a rush to get to the end goal but i really didnt get on with aza before and stopped it after 3 weeks but hopefully that was the crohns causing the problems not the aza.

big thumbs up that the infliximab is making me feel much better and so quickly. I know im lucky and im so relieved something has worked at last. I was getting very down and upset about it all. Now just need to get well again so i can go back to work. I never missed work until i couldnt go anymore!