Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Remicade NOT working-what next?

The trial of Remicade at 8mg/kg was a failure. After nearly 4 weeks, there has been NOTHING in the way of positive response.

If you are one who didn't get anything out of Remicade, what DID you get response from? This is curiosity, nothing else.

My personal thinking is to go with Enbrel since it's a different type med than Remicade (monoclonal antibody). Humira is another 'mab'. Have appt with rheumy a week from Wednesday.

Hey Rumble, It's just such a crap shoot trying to figure out which is going to be the magic recipe isn't it? Sorry to hear that even at that dose, it didn't help.

Sounds like your response is about the same as what I'm having to a double dose of Simponi (another 'mab' drug). Kind of disappointing.

But I had a hugely positive response to enbrel (a 'cept') so maybe you'd (fingers crossed) would have a great response to enbrel too! So, there is hope. I seemed to be a great responder to a 'cept' drug, and not at all to two 'mab' drugs, so perhaps you'll be the same. I know I've said all this before - sorry for being repetitive.

I hope you can try enbrel. And I hope it does wonders for you.

Let me know what your rheumy decides to stick you with. Good luck!

Thanks for the positive mention of Enbrel.

Why did you stop it, if it worked so well? Reaction?

Such a crap shoot, indeed. Early in 2009 was when I was labeled as 'inflammatory arthritis'. I have been on numerous things that either didn't do squat or only helped partially. Two years later and it's STILL not under control. Maddening! Since Remicade takes so long to work (it's been 7 months!), I'm thinking that Enbrel's success would be noted in far less time...by 3rd or 4th injection? That would be 2 months, which would be awesome!

LDN has been mentioned, but I take too many narcotics right now to be able to do that one.

Thanks for response. Hope you are doing better.

dear rumble:

i went off remicade because my insurance stopped paying for it in the early 2000s. the sad thing is that remicade worked for me. i got switched to enbrel. enbrel did not work for me at all.

biologics work differently on everyone. good luck on enbrel. if enbrel doesn't work, another suggestion would be to try humira.

i see that you are also on methotrexate. i am also on that (5 pills/week). is it helping you? it's supposed to work in conjunction with the remicade/enbrel to make it more effective.

leslie

From another perspective, I've been on Humira injections for the last 3 1/2 months. I would rate the benefits, for me, almost the same as if I'd taken 1 pill of Celebrex daily. I still have the same aches and pains in my shoulders (even more actually) and hands so the relief from Humira seems to be in other areas such as movement and limberness. And my fingernails have cleared up completely from the whatever was happening to them underneath. No change from from my psoriasis though. Hrrumph...

And now I've been laid up with a huge cold/sore throat/nausea etc for the last week so that might be the lowering of the immune system at work. Who knows, as we're all wired differently.

I'm going to go off Humira for a month or so to assess the differences.

Thanks, Leslie.
My thinking was that Humira and Remicade were both 'mab' and Enbrel is 'cept.' Thus the reason to try Enbrel. All depends on what rheumy says, obviously. It sort of sucks that they work differently on everyone...grrrr. A 'sure bet' would be really nice right now.

What are you taking now besides MTX?

I've been on 6 pills (15mg)/week for most of the time I've been on MTX. I tried a higher dose as the 15mg/week doesn't control symptoms enough. But all I got was hair falling out...no benefit above what I had at this dose. Without the MTX, I do badly. Only NSAID I can take is aspirin. If the others helped, I'd probably go with them and take the stomach protectors, but none of them helped longer than a couple of weeks or I had so many side-effects that it wasn't worth the trouble.

Was also going to look at biologics that aren't TNF inhibitors, but it's probably too soon to look at those.

Thanks again.

Not exactly a ringing endorsement of Humira. Eeek. Once you stop, maybe you'll find it's working better than you thought? Hope the cold, etc, gets better while you are off the Humira.

Thanks for the note. Hugs to you!

Hi Rumble,

From memory, I think it was only after the 6th week that Remicade kicked in for me, and we're talking in a big way.

I went from waking up in agony (after 3 hours sleep), with a back that was so siezed up I couldn't move my arms for the first couple of minutes, to (after the 6th week on Remicade I think it was) waking up after 6 hours sleep just being mildly (relatively speaking) seized up.

Hopefully you can hang in there and see if it is going to kick in.

I remember that I was told it usually took a while - probably the longest of all the biologics, to kick in.

All the best,

James

Hi Rumble,

It is really unfortunate that you appear to be a non-responder to Remicade. I was very lucky in noticing a dramatic improvement only 4 days after my initial infusion. I wish so much that all kickers could be so lucky.

Definitely worth giving Enbrel or Humira a trial. I know how frustrating it is to change and then wait again in the hope of a positive result... but you never know when you might hit on the combo that is right for you!

Will keep rooting for you!

Hey Timo,

Sounds like small gains and not necessarily worth the trade off if your shoulders are still feeling worse. We all know that 1 Celebrex just doesn't come close to cutting it. Oh that is so disappointing!

Really sorry that you are under the weather with a rotten cold virus.