Flare up on remi?

[Mister_Hotspur]

I started Infliximab end of June and had my third infusion 3 weeks go, this past week I've a few pains and this weekend it's been quite bad. Does anyone else have or had flares on Infliximab? Does this mean it's not working?

Starting to get a bit worried as I know there's not really anything to try after this, I don't really fancy another resection as I'll probs end up with a bag
one thing I found was one week before my third infusion the last one had started to wear off and I was feeling a flare coming on, ive put a but of weight on and my dose wasnt upped, would've only have been by 15mg though.

I'm going to see how the next few days go, I don't want to alert my gi yet as I know he'll will want to do a scope soon

On another note, what are the chances I have had a placebo? I'd like to think not but I know they have to do trials..

 

[Ian]

Hi Dave,

They may be able to increase your dose and/or shortern the time between infusions before deeming the drug ineffective. You can probably stand to be on a higher dose of Azathioprine if you're tolerating it well? Although I know the Allopurinol is used to enhance it, which might be why your Aza dose is lower. Contact your GI though. Scopes suck but untreated disease is far worse in the long run.
I don't think there's any chance you've been given a placebo. They do issue them in trials, but you're not in one are you? I'm sure using you as a test subject without your knoweledge and consent wouldn't be allowed.

And have you tried Humira yet? If sure that would be the next step for you before surgery is considered. Most people move on to it if/when Remi fails .

 

[DustyKat]

What trial are you on??

Dusty. xxx

 

[Mister_Hotspur]

Dusty, I'm not on any trial that I know of, now when I think about it I very much doubt I am. After my first two infusions I was getting a numb arm/muscle aches and also had a couple of dizzy spells which are highly unusual for me..must be something in those infusions.

Ian, I was on 150mg aza but gi reduced it with the allo, last time I saw him, he thought it was starting to work. I know humiras another option which I've not tried, Im surprised they pick Infliximab over humira because I know humiras cheaper. Hopefully this pain in my side will go soon either way it's frustrating. It's really annoying not having any control over it

Thanks for the replies guys

 

[scoutfinch]

Dave- I am going through almost exactly what you are. I started Remicade in late April and just had my 4th infusion in early August. About 2 weeks prior to the 4th infusion, the symptoms started to creep back (cramping pain, nausea, bowels less regular). After getting the 4th infusion, I felt fine for about a week and a half. Now, just 3 weeks after the infusion I feel like I am in a full flare - almost as bad as I was pre-Remicade. I'm not sure, but I might be flaring due to stress (work has been insane). I really really hope that is it. I'll be calling my GI if I don't feel better by next week. Maybe I'll need to up the dosage for my next infusion (4 long weeks away!).

I'm sorry I have no real advice to give you, other than maybe talk to your GI. I've never been able to control a flare well, so I'm just sort of tolerating the pain and being miserable right now.

 

[Mister_Hotspur]

Its working! ..apparently. I saw my Gi yesterday and my crp was 1 and esr was 25 which is good and the fact that I've put on weight is a good indicator it's working.

The bad part is I'm still getting pain in my side, he reckons this is either the abcess healing+ things getting back to normal, or it could be strictering.. I said it's bearable, it's like a bruising feeling which varies in intensity and is intermittent - does this sound like either of those?

Either way it's not a flare up, he wants to do a scope in a few months after some more Flix' so i guess il have to wait and see.

 

[uli]

Been on Remicade for 2 years now and having an ok life, but did have a few slight occasional flares during this time and was also hospitalized due to an abcess - so just remember folks, it works different from person to person and will only make symptoms less noticeable - sometimes its good, sometimes less good. No cure here.

 

[tpd320]

I have been on Remicade for exactly one year. I have had zero problems until last week. First flare in a great while. Family Doc put me on a short burst of prednisone to see if that knocks it back into remission. Also, awaiting a call from my GI doc. Kinda curious as to what she has to say. However, I did start taking a very powerful workout supplement right before the flare came on. I have since thrown it away. Hope that was all it was. Keeping my fingers crossed.

 

[Mountaingem]

Hi everyone! I've started experiencing a flare on Remicade, after a year of remission. I'm sure I'm not the only one here going through this. Let's give this thread a bump and hear everyone's updates please

 

[s.a.m.]

Been on Remicade for 2 years now and having an ok life, but did have a few slight occasional flares during this time and was also hospitalized due to an abcess - so just remember folks, it works different from person to person and will only make symptoms less noticeable - sometimes its good, sometimes less good. No cure here.

Uli I am in a similar situation, recently hospitalized for an abscess. Were you able to continue Remicade infusions after this incident?

 

[llcoorev]

What do you guys do during a flare up?
I tried different things, but most of the time i have them before/during and after I had my periods. I wonder if changing my diet will help me.. I even take cortisone and was good for a while with that, but now they start again...

 

[Mountaingem]

I had to go back to Cortifoam, plus Pentasa 4 times a day, pred, Flagyl and Cipro. It sucks but it seems to be working.

 

[uli]

@s.a.m
Yes I'm still on Remicade with 6 weeks intervals, however it seems that since the abcess being removed the effect from Remicade is less noticeable. I think this is a coincidence and that I'm just unlucky that the positive effect from Remicade is starting to taper off after 2 years of usage. Flare ups are back every month now, but they are manageable with only light discomfort but this is an extremely frustrating situation right now.

 

[J_Matrix]

Hi Similar thing is happening to me.

I've finished the loading phase and felt the best I have felt for years. Normal BM, everything hunky dory.

But now I have some symptoms creeping back, no way as bad as before I was on Infliximab but still enough to be annoying ( some stomach discomfort, and more frequent trips to the loo).

I have a week to go before my next infusion and I am hoping this will put things back on the straight and narrow.

Would you say that this is quite a common thing?

 

[guest9933]

This might sound a bit stupid but i have read somewhere that you can flare in the first year of treatment something to do with this stupid disease I would try a no fiber low residue diet and heaps of water this happened to me and the flare passed by itself within about 5-7 days hope this helps

 

[uli]

@J_Matrix, yes if you've just started Remicade I would expect things to take some more weeks before it really kicks in - in a good way, dont worry it will happen. It was my experience anyway.

 

[Nell Bell]

I have been in a flair since July 2011 and at the end of January I will receive my 4th infusion (after trying other avenues), at this point I have noticed some change but not enough to boast about... I also deal with a lot of light headedness for the first couple of weeks after the infusion and then it seems to go away... I'm also extremely tired afterwards but that doesn't last more then a few days sometimes less if I'm able to get rest, but that's hard with a toddler full of endless energy running around! Not to deter you from your course of treatment, but I have had 3 stays (a week at a time) in the hospital since I started remicade. Now with that being said I'm still staying positive about this treatment and fingers crossed for more noticeable results! One thing I have learned and that this forum has opened my eyes too is that someone somewhere in crohnie world there is somebody going through the same exact symptoms as you.... And for me it gives me relief to know "I am not alone"... Because as we all know being alone is all to often a reality for us. Good luck and I'm sending positive/healing vibes your way. :0)